My Everest: How I conquered Epilepsy
In #EpilepsyWeek 2019, as someone who suffers with Epilepsy, I felt the need to share something of my story, to raise awareness of the condition, and be a voice for those who suffer with it far worse than I do.
Childhood memories
I was diagnosed as a child, after experiencing my first, (and sadly not my last), seizure, playing outside with my dad, in the sunshine, in our back garden. I lost consciousness, and landed on my chin, on the edge of our concrete patio. Bleeding, I was quickly rushed to hospital by my very concerned, and very confused parents.
After being stitched up, I spent a number of days in hospital, (which I recall being a bit of an adventure), while the medical staff conducted tests to understand what had happened to me that fine sunny evening. Shortly after being discharged, I returned to hospital again, for an electroencephalogram, and was eventually diagnosed with Epilepsy.
“Its side affects, soon became a challenge, in two specific ways.”
One to be taken, twice a day
So, my lifelong relationship with Epilim®, the medication I was prescribed with to manage the Epilepsy, began, taking one, twice a day, every day. Its side affects, soon became a challenge, in two specific ways. Firstly, it impacted my memory, leading me to forget, among other things, and rather ironically, to take the Epilim® itself! Secondly, it impacted my ability to think quickly, leading me to struggle in class, in conversation, and in life.
“Epilepsy, and Epilim®, had a profound, negative impact, on my education.”
Hard lessons
As such, Epilepsy, and Epilim®, had a profound, negative impact, on my education, particularly in my teenage years, as I found understanding what I’d been taught, and remembering what I’d been taught, at the pace I was being taught it, extremely difficult, if not impossible. In spite of this, I did manage to leave school with a few qualifications.
Seized by Epilepsy
As I mentioned, my first experience of a seizure, wouldn’t be my last. I continued to experience seizures throughout my teenage years, and into adult life, though they were thankfully, few, and far between — years apart in fact.
Eventually, voluntarily, and rather foolishly, I stopped taking the Epilim®, as I’d been ‘seizure free’ for such a long time, and didn’t want to suffer the side affects any longer. This was a mistake, which inevitably resulted in further seizures. Needless to say, I went back to taking them.
“The seizures, up until this point, were largely triggered by light sources.”
The seizures, up until this point, were largely triggered by light sources — a computer screen in an electrical store — a strip light in a doctors surgery, to name but two. But light wouldn’t be the only trigger for the seizures I experienced, as I would later discover.
“Epilepsy had an impact on my family.”
Family life
Epilepsy had an impact on my family life. As a child, it had an impact on my parents, and as an adult, it had an impact on my wife and children.
“I’ve been careful to avoid situations that might trigger a seizure, and situations that might require me to think quicker than I’m able to.”
I’ve been careful to avoid situations that might trigger a seizure, and situations that might require me to think quicker than I’m able to. I avoid extreme sports, (or sports of any kind in fact!) I cover my eyes at gigs, when strobe lights are being used. I always read the disclaimers where you’re required to sign your rights away, at places like trampoline parks, and go karting tracks. I’ve taken the responsibility to remain healthy for my wife and children very seriously.
In some respects you might say I’m extremely risk averse, and I’m sure, that as a result, this has meant my wife and children have not been able to enjoy some of the pleasures others take for granted.
Epilepsy put a hold on my driving lessons too, meaning my wife had to do all the driving, for many years. Under U.K. law, (understandably and quite rightly), you’re not allowed to drive following a seizure. At one time, the law stated you had to be ‘seizure free’ for three years before you could drive again, though, in recent times, it’s been reduced to one year. I passed my driving test at thirty years of age – finally!
“Epilepsy wasn’t going to conquer me — I was going to conquer Epilepsy!”
Conquer, or be conquered
The frustration of getting there long after others have done, sums up my experience of Epilepsy. But in all of it, I’ve determined that it won’t stop me from realising my hopes and dreams. Epilepsy wasn’t going to conquer me — I was going to conquer Epilepsy!
“It’s in my work life, that I’ve really been able to conquer ‘Mount Epilepsy’, and raise a flag of victory over it.”
It’s in my work life, that I’ve really been able to conquer ‘Mount Epilepsy’, and raise a flag of victory over it. Like any mountain climb, it’s not been easy, and that climb is a story worth telling in itself.
Climbing, and conquering, ‘Mount Epilepsy’
I was working as a freelance graphic designer, at a design studio in Leeds, Yorkshire. Busy, working on my laptop, one of the design team engaged me in conversation. He asked me a question, which I felt obliged to answer, and then followed that question with another, and another, and another. It wasn’t long before I grew acutely aware that I was being watched by the Creative Director, whom I reported to, and I grew acutely concerned that I would be reprimanded for talking, or worse, not be asked to come to work the following day. Still, the questions continued, and I became overwhelmed.
“The next thing I knew, I was on the floor, dazed and confused.”
The next thing I knew, I was on the floor, dazed and confused. I’d had a seizure. This time, it had been triggered by stress — in computer terms, my brain had crashed, and shut down. I’d lost consciousness, hitting my face on the desk, breaking a tooth. I then fell onto the floor, convulsed, and bruised myself on the carpet. Not a good day at the office.
I’d learned the hard way how important it was to take my Epilim®. I’d been struggling to remember to take it.
“I began to wonder if I’d ever be fast enough in thought to be employable, let alone climb the career ladder!”
I had to surrender my driving license, and use public transport, but thankfully, after a few weeks off, was able to return to work. As I couldn’t drive, I qualified for a Disabled Persons Railcard, which helped. The challenges didn’t get any easier, and remembering to take my Epilim® only seemed to get harder. I began to wonder if I’d ever be fast enough in thought to be employable, let alone climb the career ladder!
Then, in 2011, in a twist of faith, I found myself changing career, working as an Email Designer and Developer, something that I could not only get my head (and my brain) around, but something I could excel at!
“I’d learned to overcome Epilepsy. I’d learned to conquer it.”
A few years later, I found myself on stage in London, presenting at ‘Completely Email’, an industry conference, and later that year at the industries flagship conference, ‘The Email Design Conference’, hosted by Litmus, in Boston, MA! I’d learned to overcome Epilepsy. I’d learned to conquer it.
“I was open and transparent about my suffering with Epilepsy, and thankfully, was welcomed in spite of it. My wellbeing has been given priority, and I can openly and honestly talk about Epilepsy, and the challenges it presents.”
Shortly after returning from Boston, I was offered a six month contract at a company in North Yorkshire, where I was eventually offered a full time role. I was open and transparent about my suffering with Epilepsy, and thankfully, was welcomed in spite of it. My wellbeing has been given priority, and I can openly and honestly talk about Epilepsy, and the challenges it presents. Something I’m very grateful for.
Since then, I’ve delivered more talks and workshops, in the U.K. and the U.S.A., written, designed and published a book, written, designed and published an email, and written a number of blog posts, each time conquering Epilepsy, each time proclaiming a victory over it.
