Inspirational Sarah highlights ‘hidden’ disabilities
Published on: 28 Feb 2016
SARAH Reid was seven years old when she tripped over while walking with family and friends along the Bristol to Bath railway path. She cut her head and was promptly taken to Frenchay Hospital.
After being patched up, she was sent home only to be rushed back a week later with suspected meningitis. Tests were carried out and the news broken to Sarah and her family that the head injury had left her with epilepsy, a neurological disorder which causes convulsions and loss of consciousness.
When the condition was at its worse Sarah, who is now 35, endured up to five seizures a day. It completely changed her life. She wasn’t even able to take a bath without the fear of drowning. Yet looking at her, you would not know she was registered disabled.
For the past 10 years the Staple Hill mum-of-two has used her experience of living with epilepsy to educate others and raise money for charity.
“When I get on a bus and use my disabled bus pass, the driver will look me up and down as if to say ‘You’re not disabled’,” Sarah says.
“People assume I should be in a wheelchair or have a white stick if I’m disabled.
“I once had a seizure outside of Sainsbury’s in Kingswood and a man came up to me and told me I wasn’t fit to be a mother. He assumed I was drunk. I’ve never had alcohol in my life; I can’t do that with all the medication I’m on.
“I want to eliminate the risk of what has happened to me happening to other people whose disabilities can’t be seen.”
Sarah decided to start fundraising 10 years ago but she was first tasked with losing the weight she had piled on after the birth of her first daughter Layla.
She tipped the scales at a very unhealthy 20 stone but following a remarkable weight loss of 10 stone, Sarah started to run marathons for various charities.
However, for the past three years she now raises money for specific charities - Epilepsy Action, Epilepsy Society, Young Epilepsy, Young Carers and Mothers for Mothers, who support mums with post-natal depression. She will think nothing of standing in a supermarket for hours on end with a collection tin, telling people about the realities of epilepsy. Sarah also speaks at schools and organisations such as the WI to get her message across.
“Epilepsy has taken my independence away,” said Sarah.
“People take simple things in life for granted, like having a bath or cooking the tea, but for me they come with the fear of drowning or causing a fire.
“I’ve had countless job interviews and everything is fine until they find out I have epilepsy and then the facial expression of the person interviewing me just totally changes. They tell me they will be in contact but I never hear from them again. I’ve even had two jobs where I’ve been sacked after I had a seizure in work.”
Sarah, who lives with husband Mark and daughters, Layla, 11, and Lauren, three, said one of her key messages is that not all disabilities can be seen.
“When I was at school the teachers used to tell me off for day dreaming when really I was having a seizure. Everyone thinks having a seizure means you collapse, fall to the floor and shake when that’s not always the case as there’s over 40 different types of seizure.
“I’ve also met children who are told off by their teachers because they assume they’re naughty but they may have ADHD or autism.
“Through doing my talks I’ve met so many people who have disabilities that you cannot see and they tell me their stories and urge me to keep doing more to raise awareness. One woman I spoke to told me a man had a go at her for parking in a disabled bay. She was genuinely disabled but you couldn’t see her disability.”
Sarah’s charity work has recently been acknowledged at the annual Inspiration Awards for Women in London where she won the Inspirational Fundraiser category.
“There were lots of amazing women there,” said Sarah.
“I was told I had been shortlisted a week before but I didn’t know I’d won until the night. It was surreal, knowing that there were so many people there who had done amazing things for charity. You don’t feel like you’re as good as them so to hear your name called out was just ‘Wow, really?!’”
Sarah is not the only fundraiser in her family. In 2012 Layla, a pupil at Staple Hill Primary School, became a published author with a book called Epilepsy Book for Kids, aimed at helping other children understand about a relative’s epilepsy.
Sarah said: “Layla used to be scared when mummy had a seizure so I started looking for a children’s book to explain epilepsy to her. There was nothing aimed at a child who has a mum, dad, brother or sister with epilepsy so Layla decided to write one herself!
“Every book sold means £1 for Epilepsy Action, Epilepsy Society and Young Epilepsy.
“I want to get the book in every school so I’m hoping that there are businesses out there who would be interested in sponsoring a book for their local school.”
In April last year, Sarah underwent brain surgery at Southmead Hospital in a bid to reduce the number of seizures she was having.
“It was a routine operation in the surgeon’s eyes as he does it every day but it didn’t feel like routine to me as they had to cut part of my brain away. They told me the risks involved included loss of sight and memory.”
But rather than focus on the negatives, Sarah used the operation as a chance to raise money.
“I expected to lose a lot of hair during my brain surgery so I organised a sponsored head shave. When I came round after the operation, the surgeon had only taken away a tiny amount of my hair. My family said ‘You’ve still got most of your hair so do you really want to do a head shave?’ But I still wanted to do it! It took place a month after my surgery in the middle of Kingswood Co-op. We raised £250 for Epilepsy Action so it was worth it.”
Following the surgery, Sarah experienced tunnel vision but thankfully her eyesight is now back to normal, although she is not yet allowed to drive. She still suffers memory loss and is used to having to write reminders down all the time.
“There’s Post-It notes all over my house! But fingers crossed, I haven’t had a seizure since July. I’m finding it hard to get my life back on track as I’ve lived with epilepsy for 30 years. I ask myself ‘Am I still me?’ The doctors said I might feel like this. Everyone thinks if the surgery stops the epilepsy, you would be like ‘Yay, I’ve been cured! Fantastic, I’ve got my life back.’ But really you’re left feeling your identity has been taken away. You are so used to living a life which is so limited, it’s so weird to get used to the fact that I can go out in public, have a bath or cook the tea. It takes a lot of confidence to just do those things.”
If you know of a school or organisation which would benefit from Sarah giving a talk, you can contact her by emailing firstname.lastname@example.org
Epilepsy Book for Kids is published by Bristol-based Pomegranate Books and costs £6.50 plus postage and packing. Visit www.pomegranatebooks.co.uk for details.