I have lived with epilepsy since I was 14, but I am also someone who is in love with education. My built-in curiosity, creativity and love of learning has seen me transition to an English teacher at post-primary level. I am charged with enhancing open mindsets, building skills that are creative, flexible, problem-solving, analytical, and ultimately to help students fall in love with learning so that they can carry that passion on into the future into whatever avenue it takes them.
What breaks my heart is to see a student stopped in their tracks because of something they did not ask for or, at times, have any control over.
In Ireland, we have all been well prepped for problems; we even named a law after it - by the name of “Murphy”. He tells us that “anything that can go wrong, will go wrong”.
Our education systems by the very essence of what they try to promote within our young people must be examples of best practice and therefore must find solutions to problems it knows are going to happen.
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Why then is our education system which wants us to promote flexibility and problem-solving abilities so inflexible and unwilling to problem-solve itself?
Aftermath
But what is this problem I speak of? First, let me briefly describe to you what it is like to have seizure and what you feel like in the immediate aftermath.
Immediately, I know “it” has happened again. I scan the room to take in what is happening as people rush about and look worried. I don’t have the energy to acknowledge them, so I choose to stay where I am and keep floating around in my mind. As well-meaning helpers try to get me to my feet, I groggily tell them that I can’t yet. I know I must move, but I don’t want to. Do I have to? I am so tired, and can barely move.
But I do move and to the naked eye, once I move and get back to my feet, I’m back to “normal”.
Nothing could be further from the truth. After a particularly bad seizure, I’m in a state of what feels like an endless tiredness and numbness. My mind is drained. My body is drained. My soul is drained. Everything is hard and everything is a challenge. Imagine the most tired you have ever been - and multiply it by 1,000 and imagine your confidence shattered.
I often injure myself after a seizure. So sometimes I will require hospitalisation, but sometimes not. Imagine this happens in the middle of your exams, imagine what must be racing through your mind (that’s not exactly working properly), imagine what that must feel like…
State exams are a highly pressurised time and even the best of our students who were once the cute fluffy gremlin Gizmo turn to their alter ego gremlin (just add water).
For people with epilepsy, stress exacerbates their condition. It is not surprising that at a time when most of the teenage population having turned to little monsters that there is an increased likelihood of a seizure happening.
I have described to you what it feels like after a seizure - and many of you reading this will remember exactly how the Leaving Cert made you feel. Stress, anxiety and pressure are the bywords of our State exams.
I now ask you to imagine having a seizure, like the one I described, and then having to sit your Leaving Cert exams. Is this fair? Of course not. I ask you to imagine this because many of our young people with epilepsy do not have to imagine such a scenario - they have to live it.
This is the problem I speak of.
Seizure
As it stands, if a child (a child who is about to enter adulthood, but a child nonetheless) with epilepsy has a seizure before or during an exam and is unable to complete their exam, there is currently no provision to allow them to re-sit their exam within the same cycle - when they might be able to better perform.
Instead, they will have to wait a year until the next exam cycle to re-sit the exam in order to have another go. This puts young people with epilepsy under even further pressure at an already stressful time and inevitably leads to seizures for some unfortunate students as the stress and worry gets all too much.
While this year will be different with accredited grades in place as a back-up for the class of 2021, a daily conversation we’re all having is getting things back to “normal”. For Leaving Cert students with epilepsy in 2022, 2023 and beyond, “normal” is not good enough.¨
The “wait a year” solution currently employed by the Department for students with epilepsy doesn’t work. I was trying to think about how I could describe the impact of this to you and bring you to the perspective of a child living with epilepsy who has had a seizure during or before their exam - and it dawned on me, we now all have experience of this.
Think back to when Leo Varadkar walked to that podium in March 2020 and pressed the pause button on all of our lives. The suddenness, inflexibility of it, the fear, the sense of loss, the questions that arise - this is what faces our student who has just had a number of life choices taken from them in the snap of a finger, or rather in the electrical storm of a brain. All because of something that sometimes they have no control over.
Long-term condition
It is very much a ‘computer says ‘no’’ approach and in an education system that promotes problem-solving amongst students, I would suggest that the system look inward and harking back to Murphy and his law, recognise that there is a known problem here for these students living with a long-term health condition and address it.
Ironically, the Department of Education has very thoughtfully included “reasonable accommodation” for people that have bereavements during State exams so the system is in place - it just needs to be amended to include our students with epilepsy and others with long term health conditions that may impact on their performance or prevent them from sitting their exams.
A recent Epilepsy Ireland survey found that 93 per cent of the Irish public supported a measure to allow students with epilepsy to resit their exams within the same cycle or at least before such a time that CAO offers issue. Many of those would have come through our education system that promotes problem solving - and recognise that this is a problem that can be solved.
The Leaving Cert and life in general are hard enough - let’s not make it even harder for our young people living with epilepsy and other long-term health condition. We must do better for our students and ensure a “new normal” is in place for our students in the future.
Emma Beamish is a secondary school English teacher and former international Ireland cricketer
