This article was kindly provided to us by the Metropolitan Police Service Disability Staff Association and first appeared on the MPS intranet
March 26th was Epilepsy Purple Day. Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. Last year, people in more than 85 countries on all continents participated in Purple Day. The origins of Purple Day go back to 2008 when Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy’s goal was to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone.
So what is epilepsy? It is defined as a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. The brain controls the way we function, Inside the brain, millions of nerve cells (neurones) pass messages via electrical signals to each other. During a seizure these electrical signals are disrupted and this affects how you feel or what you do while the seizure is happening. Epilepsy is usually only diagnosed after a person has had more than one seizure and not all seizures are due to epilepsy.
Epilepsy can happen to anyone, of all ages, races and social classes. UK statistics suggest that epilepsy affects around one in every 100 people in the UK. Every day, 87 people are diagnosed. One in every four people newly diagnosed with epilepsy are over the age of 65. One in every 220 children will have a diagnosis of epilepsy. That’s an average of one child with epilepsy in every primary school and 5 in every secondary school. There are around 60 different types of seizure and a person may have more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness.
Photosensitive epilepsy affects 3% of people with epilepsy. In this type of epilepsy, seizures are triggered by flashing or flickering lights, or some patterns.
The consequences of an epilepsy diagnosis are severe and wide-reaching, It can also affect someone’s education and employment prospects, and lead to an increased degree of social isolation. For more information please see the links below.
One of the networks within the DSA is the Epilepsy Support Network who provide Peer to Peer support, sign posting and a listening place for those living with Epilepsy. Stephen Lewis Is Lead of the Network and has written about his journey.
A different kind of brainstorm
It was the week before Christmas 2011 and I had collapsed in my kitchen. I woke up in the Intensive Care Unit and spent six hours being checked over by doctors who said they thought I may have had a seizure. I was 36, and the idea of having had a seizure seemed a universe away from where I was at that time. I remember my New Year’s Resolution was ‘To Take Every Opportunity That Came My Way’, so when the London Marathon ballot came out as it does every year at work, I sent in my email entry fully happy that I had stuck to my resolution.
Only trouble was they picked my name out, so now I had to run a marathon, and the farthest I’d ever ran before that was about three miles at Hendon back in 2002!
During the next four months I was sent to professionals and neurologists, examined and probed more than an alien abductee. In between this I had more seizures and they put me on a course of medication that made me very sick. I couldn’t believe medication to help you with seizures would give you nosebleeds, stomach cramps, acne and make your hair fall out!
I remember one appointment with my neurologist – he was telling me that they had found a shadow on my MRI scan and an abnormality on my brain. It was called Cortical Dysplasia and this occurs when the top layer of the brain does not form properly. Technically I’d had it my whole life and on that day in 2011 my brain went to send a signal from one part of my brain to another and the fuse broke. That’s how I explained it to my children, who were so young at the time. They came up with a really great name for it, they called it a ‘glitch’ and when I showed them the MRI scans they thought it was brilliant.
But I wasn’t always so open – I did hide a lot of things from my family. Both my Mum and Nan were alive back then and I didn’t tell them that dysplasia is a lesion on the brain, a growth that once discovered has to be checked and measured to make sure it isn’t growing; or that my neurologist did have initial concerns as to why a perfectly fit 36 year old male with no hereditary illness or previous condition should suddenly start having seizures. My Mum and Nan were upset enough to know I was unwell, and there was no way I was going to worry them further.
So in between all of this I was trying to navigate my personal life: work out how to get around without a car, get to see my kids at the weekend using buses and trains. And figure out what the rest of my life was going to look like in amongst all the tests, seizures and medication side effects.
Then came work, which started off with very supportive and line managers and Occupational Health worked to help me be able to still have a meaningful role. But as with all units, people move and the replacement line managers were not so caring or at all supportive. I tried many times to explain my condition to them, but no matter how or what I tried to do to get their help, I can only describe my time working with them as a horrible experience, when all I had done was become ‘very ill’.
During this time I started the Epilepsy Support Network as a way to focus my energies, to help any others who may find themselves with my condition and need help and also as a place to keep all my information in one place. That was when I became involved in the Disability Staff Association and realised that there was a lot of support for officers who were also suffering from similar situations as I was, including a great deal of information on a lot of other subjects.
Since then I have been fortunate to work with some very kind and amazing people, who have who have helped me to grow stronger and utilise my skills so that I can work to the very best of my abilities. I am involved with the Blue Light Champions Network, I am a Mental Health First Aider and assist a number of other staff associations within the Disability Networking strand. I also work on the local Wellbeing Team and I am extremely fortunate to work for a very supportive Senior Leadership Team who have the health and welfare of their officers and staff at the forefront of their minds.
A lot has changed in nine years and I am very proud to have been a small part of that change.
Oh, and just in case you were wondering – I did run the Marathon in 2012 and finished it in 6 hours, 9 minutes, 12 seconds.
Take care. ∎