May 29 marked the end of National Epilepsy Week 2022, during which Epilepsy Scotland raised awareness of the condition and shared the positive message that people can “Excel With Epilepsy”.
I was delighted to see their campaign on social media last week. Epilepsy has a special resonance in my life because two people close to me have developed it in recent years.
One of my best friends, who I’ve known for almost 20 years, was unexpectedly diagnosed with epilepsy less than five years ago. One day at work, while in his mid-20s, it announced itself, in the form of a massive seizure.
Since that day, his life has changed dramatically. He can’t drive anymore. He’s also been unable to work. He’s a dad. It hasn’t been easy.
For the last two years, he’s been on a number of different medications, in varying doses. His health has been sporadic. Every few months, he’s been in hospital, or out of action for days, following a grand mal seizure. The rest of the time, smaller seizures have disrupted his days.
Try finding an employer who will happily allow for all this. They’re rare, sadly.
To everyone who is living with epilepsy. Remember how strong you are at getting on with life whilst living with a neurological condition!#ExcelWithEpilepsy #EpilepsyWeek #NationalEpilepsyWeek #Epilepsy #EpilepsyAwareness #EpilepsyWarriors pic.twitter.com/gX9DsOtKqy
— Epilepsy Scotland (@epilepsy_scot) May 29, 2022
My friend is one of the strongest people I know. He’s weathered this storm with immense courage and dignity. He’s still able to crack a smile and remain positive about what the future holds.
He’s confident he’ll learn to live with epilepsy with the right medical plan in place, and I hope and pray that he will, soon. I also hold out hope that a job will come up.
We need more awareness and willingness
I mentioned that there are two people in my life with epilepsy. The other is my cousin. He was recently found to have a rare form of the condition, resulting in small seizures happening in the brain all the time.
Progress is being made, but there is a long way to go
It disrupts his sleep significantly, making him exhausted through the day. Sadly, this is affecting his cognitive development.
You wouldn’t know my cousin is grappling with this, unless you were told. He is a happy wee boy.
As with my friend, I am hopeful that he will find other forms of support throughout his life. This isn’t inevitable, by any means, with a postcode lottery in support already, and cuts to services on the horizon.
If there are two things that have been impressed on me through my loved ones, it’s the need for more awareness, and a willingness in various sectors to adapt to people’s needs. Progress is being made, but there is a long way to go.
I hope many will join the campaign for change, to ensure people with epilepsy can truly excel in Scotland.
Jamie Gillies is a campaigner and commentator based in the north-east of Scotland
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