Families come in all shapes and sizes, and even though they can get on our nerves sometimes, we always love them. We can also never forget that having epilepsy doesn’t just affect us personally, but it also has a profound impact on the people that we are closest to. We can sometimes forget that they can worry just as much or more about our health and welfare than we do.
So I have decided to have a heart-to-heart with different members of my family to see how my epilepsy has affected them. I’ve begun with my younger brother, as I was keen to see how he really felt about the experience of my first seizure to being diagnosed with epilepsy a few months later. I always thought it must have been very difficult for him as he was only ten years old at the time. Yes we’ve reflected on these events, but I have never been brave enough to ask him how he felt.
Here’s our interview:
Can you remember the day that I had my first seizure?
Yes, it was a sunny, summers day, we had not long finished dinner and I was eating desert with Rich (our other brother) in the Livingroom. You had been unwell all day; we thought you might have had a stomach bug. Mum and Dad were in the bathroom looking after you, and I suddenly heard a loud cry from Dad. He was screaming out to Mum that you were biting his finger *. Dad then asked Rich to fetch our neighbour who was a paramedic – he was out, and Mum was phoning for the emergency services.
The paramedics quickly arrived and disappeared into the bathroom to help you, I then finally saw you been taken out on a wheelchair, wearing an oxygen mask and looking disorientated. I was confused and worried, I didn’t know what had actually happened or whether you would be the same again.
I followed you up the drive to where the ambulance was parked, and at this point Grandad had arrived and was now diverting traffic. Dad went into the ambulance with you and mum followed. I was looked after by Grandma and Grandad.
I was relieved when I eventually found out that you would be ok.
Did my first seizure come as a surprise to you or had there been warning signs?
No, I was completely surprised, I thought you just had a stomach bug.
Can you remember when I diagnosed with epilepsy? How did you feel? What did you think?
No I can’t really remember it, I just accepted it, but I can remember Mum teaching me first aid and how to look after you if you were unwell.
What has been the most daunting experience about having a relative with epilepsy?
As a child, it didn’t really upset me, but being an adult, I fully appreciate that it is a serious condition and that worries me sometimes.
Has there been an aspect that has been positive?
Having a sister with epilepsy I find that I have good knowledge and empathy about the condition when I learn that others have it.
What advice would you give someone who has a relative with epilepsy?
Make life as relaxing and easy as possible for them and help them to avoid their triggers.
I am glad that I had this conversation with my brother, as he is the youngest in the family I have often worried that he found my epilepsy the hardest to accept, but on reflection of this interview I think that by being brought up with it, he has embraced and it’s now normal to him.
Naturally there are times that he will worry, I would instantly remove my epilepsy for him to eliminate this, yet I have strong memories of him caring for me when there was no one else around, and although I was panged with guilt, at the same time his caring nature was greatly needed and appreciated. I believe this may have helped shape him be the immensely, compassionate individual that he has become today.
I look forward to sharing the other iterviews!
I hope this has shed some light onto how epilepsy has its impact on so many other people, not just the person who has been diagnosed.
Thanks for reading!
*(TIP: DO NOT PUT FINGERS ETC. IN PEOPLES MOUTHS IF THEY ARE HAVING A SEIZURE! My Dad, like my brother didn’t know what was wrong, I fell unconscious with blue lips. My dad in his panic thought I was chocking and decided to try and clear my mouth with his finger as the seizure began… I was mortified when I found out!)