The Jet Age is responsible for my very existence. I can trace my genetic roots over three different continents and my family tree encompasses every shade of human on the planet: black, brown, yellow and white. As a multi-cultural person who has lived in several different countries it is difficult to define what I would regard as “home” and I have spent half of my life living in lands other than that of my birth. This inevitably means boarding a plane every few months just to see my immediate family who live on another continent and as a person with temporal lobe epilepsy this can sometimes present a challenge.
There is an astonishing amount of ignorance about epilepsy, even amongst those who may know sufferers. The classic symptom that people associate with the disorder is convulsions and many people mistakenly assume that it is a psychiatric problem, a muscle spasm disorder or even a personality quirk. What it is, in fact, is an electrical over firing of neural activity in the brain and depending on which area is affected it can cause a variety of symptoms such as visual, olfactory and auditory hallucinations, confused memory, distorted perceptions, strange emotions and episodes of absence of consciousness. A sufferer may continue to stand, look normal or even perform a repetitive task whilst the episode is occurring and onlookers may not even be aware that he or she is having a seizure. I have suffered from epilepsy for a quarter of a century now and I am still astonished at the amount of ignorance there is about the condition.
The strangeness of some of my seizures can sometimes be surreal, when I was in New York last Christmas I could have sworn that I could smell kretek, an Indonesian cigarette at times and places where it was definitely not present. At other times I suffer prosopagnosia, which is an inability to recognize faces causing confusion with people who I may have met a few days previously who assume that I’m giving them the cold shoulder when I’m unable to recognize them by sight alone. The most frightening aspect is auditory hallucinations during some attacks which can make a normal day into something out of a William Burroughs novel, particularly when I experience a cluster of them.
Despite my condition I have travelled extensively and dealt with the consequences as they come along. My epilepsy cannot be eliminated by medication, it can be somewhat reduced but the effects are so sedative that I find it more dangerous to travel medicated than not. There is always the remote possibility that I may suffer a grand mal but I’ve made the choice to try alternative methods to improve my health such as omega-3 supplements and a high protein diet which have improved my ability to cope with the seizures. New research as shown that a modified version of the Atkins diet can be as effective in reducing seizures in some adults as the ketogenic diet is in controlling seizures in children.
I have also recently had my amalgam fillings changed to composites, all metal fillings can produce an electrical field around the head which can trigger seizures, they are banned all over Scandinavia yet they are still allowed to be used in the US and the UK. I found have this has helped to reduce my symptoms significantly and I wonder why it is not yet routine procedure to remove mercury fillings in people who are diagnosed with neurological disorders.
Travelling with a disability can present challenges but I make certain that I plan ahead and let people such as airline staff know about my condition in case of an emergency. Unfortunately due to the nature of temporal lobe epilepsy many people may not know what to look for and I have had some bad experiences with characters who are rude to me directly after I’ve had a seizure, misinterpreting it as slowness or lack of attention. I’ve learned to cope with the stigma and reactions of others and enjoy my journey to whatever destination on the planet my travels may take me. As scientist and philosopher Alfred Korzybski once stated, “The map is not the territory.”