MY EPILEPSY JOURNEY began in the dentist’s office. The nurse was showing me braces and the next thing I know I’m waking up in an ambulance. I had experienced a tonic-clonic seizure and they couldn’t get me to come around afterwards.
It took a full year, engaging with private rather than public services, another tonic-clonic seizure and hundreds of what I know now to be myoclonic seizures (jerks of the limbs) until I was officially diagnosed with Juvenile Myoclonic Epilepsy, which is a lifelong form of epilepsy.
Wanting to keep on swimming
My biggest concern at the time related to when I could get back into the pool. I had been competitively swimming since the age of eight. At that point I was training seven times a week and competing at a national level.
Luckily, my neurologist left this decision to my swimming coach. She was happy for me to continue training and competing as normal. She figured that there was always a coach on the bank to keep an eye on me and plenty of strong swimmers in the pool who could drag me out if necessary. I cannot express how thankful I am to have had somebody so pragmatic and empathetic to my situation on the receiving end of my diagnosis disclosure.
I truly feel that her reaction shaped the way I perceive my own epilepsy and, at that impressionable age, made me believe that nothing would ever be beyond my reach as a consequence of my epilepsy.
Controlling my seizures
I am extremely lucky to say that my epilepsy has always been very well controlled. However, I am very aware that there are people suffering from more severe forms of epilepsy that have a much more pervasive impact on their lives. Therefore, my account is merely personal to my own experiences.
As long as I religiously take my medication, my seizures remain under control. When I tell others about my epilepsy, many automatically assume that I must have regular seizures. In fact, the majority of individuals manage to get their epilepsy under control using anti-epileptic drugs.
I have suffered from numerous medication-related side effects. Indeed, the first medication I tried caused me so many problems that despite the fact that it was keeping my seizures under control, I ended up having to be weaned off it and put onto a different drug. I am now on Keppra, a drug that has a notorious reputation for mood issues, but I find that taking vitamin B6 keeps the “Kepp-rage” at bay.
It hasn’t held me back
Perhaps naively, I was never majorly concerned about my epilepsy impacting on my education or future job prospects. I didn’t see why it should and had been raised in a home where it was always conveyed to me that “difference” is not something to be viewed negatively.
I was very fortunate in that I really don’t think my epilepsy did affect either of these aspects. I missed the odd day of school or college, but it did not ultimately hinder my education or job prospects.
I don’t look at my epilepsy as a limitation; rather I acknowledge that sometimes I have to make adjustments to work around it. The only drawbacks I experience regularly relate to the photosensitive nature of my epilepsy; I consequently cannot attend concerts and have to be cautious in venues with strobe lighting. I also have to be careful to get enough sleep; sleep deprivation is one of my most significant seizure triggers.
Using it to my advantage
In many ways, my epilepsy diagnosis has given me impetus to achieve as much as I possibly can in order to prove all the naysayers wrong. I have ended up in a career where my personal experience of epilepsy is actually somewhat of an advantage. I completed a doctorate in Psychology in DCU last Summer, whereby for my thesis I explored the disclosure experiences of families living with epilepsy.
While doing so, I published a number of academic papers and got the opportunity to present my findings at conferences in New Orleans, Toronto, Innsbruck, Ljubljana and Amsterdam.
I am now working as a postdoctoral research fellow in UCD on a study that is aiming to determine the prevalence of epilepsy in a number of European countries. I believe that the personal insight I can provide in relation to my own experience with epilepsy has benefited me hugely in these positions.
Public awareness
Ultimately, I would like to play a role in making the public more informed about epilepsy. Currently public knowledge about epilepsy is very limited. Too many misconceptions about the condition prevail.
There is a long way to go in terms of ensuring that all people with epilepsy are treated with respect and afforded the same opportunities as people who do not have the condition.
I believe the more epilepsy is spoken about, the less people will unnecessarily fear the condition. People with first-hand experience of epilepsy can be instrumental in making epilepsy more visible.
Ailbhe Benson is a postdoctoral researcher at UCD. For this year’s International Epilepsy Day (February 13th), Epilepsy Ireland is focusing on awareness of the condition in the workplace. For more information log onto www.epilepsy.ie.
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