A Glimpse into Epilepsy

In my four years of medical schooling, one of my stand-out conversations and lessons learned was from a consultant neurologist, working within the mysterious field of brain disorders. He did not so much demand as instruct that, if I wished to pursue a career in neurology (I was toying with the idea at the time, and to an extent, and still am), I ought to “be a bit more eccentric." He told me that I should get a tattoo. So, like the impressionable medical student that I was, I did. It is a simple lightning bolt, black ink, barely noticeable. It sits behind my right ear. Very few people see it or ask about it. But it represents to me all that is magical about the brain: It represents the name my family gave to the seizures that my epileptic brother, Alfie, suffered from in childhood. It represents a step taken to make the seizures seem less medical, and hence less frightening. Fear is at the root of all that we do not understand, and medicine is a complicated field frequently underpinned by it.

Nature otherwise dictates that humans tend to inherit the beliefs and interests of those closest to them—so-called “personality traits,” even though we might attempt to deny this. For a long time, I believed that my love and curiosity of medicine, and, namely neurology, was something I had discovered myself. This was in the same way that I pretentiously stumbled upon obscure rock bands as a teenager, and became instantly possessive of. But, in reality, nature has had its way. Instead, I owe this interest almost exclusively to Alfie, who was diagnosed epileptic at the age of seven. He has been stuck with it ever since.

One of my favourite sayings that I overheard at a conference from an American brain surgeon is that “the brain is beyond our understanding.” I’ve always thought that’s about right. Through what experience I have had of neuroscience, I still find it remarkable that we know so little about the organ that governs our existence. This is especially when compared to other bodily organs so crucial to life, such as the kidneys or liver, which are also in themselves highly complex systems. The same can be said of epilepsy. I have always found the term itself rather romantic—to me it implies something elusive, and beyond the immediate grasp of modern medicine. Indeed, one of my other favourite sayings, and even more relevant here, is from Hippocrates:

“People think that epilepsy is divine simply because they don't have any idea what causes epilepsy. But I believe that someday we will understand what causes epilepsy, and at that moment, we will cease to believe that it is divine.”

Epilepsy is, by definition, a very bizarre disorder: For me, the simple fact that something at the level of the brain is invoking such odd, unpredictable and (realistically, harmful) behaviours in my sibling is a source of intense, bordering morbid, fascination. How Alfie suddenly switches from having a conversation about politics at the breakfast table to lurching into intense spasms on the kitchen tiles, and recovering equally quickly with no recollection, is yet to be fully understood by anyone. Theories have been proposed, and treatments have been used (with, I should add, an enormous and equally mesmerising degree of success), but a fair amount of this is simply guesswork; of trial and error. I can just about recall the first instance I witnessed Alfie in the throes of a seizure when he was in his bedroom, and had collapsed onto his side. It was a few days shortly before he was referred as an inpatient to a specialist at a nearby children’s hospital: This particular incident led to his first official hospitalisation attributed to the complications of epilepsy, and formal diagnosis followed a battery of examinations, scans, pokes, and prods. My parents were sick with worry, but in those early days, I remained indifferent, thinking he was doing it for attention; it was common for us to have fought viciously at that age over trivial concerns, as most siblings do.

Indeed, I knew nothing of epilepsy from any family history, or in general. None of us did. There were no medics, surgeons, neuroscientists, or any other family members or friends belonging to professions even vaguely related to the area. My mother had trained as a nurse in Sheffield back in the Yorkshire Ripper days, but even she was clueless as far as Charlie’s circumstance was concerned. The term only twigged with Dad, who had come across it as a fan of the Mancunian post-punk 1970s band Joy Division, and whose lead singer Ian Curtis tragically committed suicide at the age of 23 following a short battle with poorly-controlled seizures.

In some cases, and particularly with late-onset epilepsies (that is, in adulthood), the cause might be pinpointed to specific events such as infection, pregnancy or physical insult. Alfie remains unconvinced by my mother’s hypothesis that his originated from a head injury—the result of falling out of a tree at around the same age of his presentation. It perplexes us less now, but I think it bothered my mother for the best part of a decade. At the time, strangely enough, I think they had wanted to ignore it, hoping it would go away, like an unwanted phase of childhood growth. But for me, the urge to figure it all out was too pressing. I wanted to understand what others could not. I wanted to be able to “fix” my brother and his hyperactive brain, and allow him the privilege of at least no longer having to worry that the driving license authorities were after him whenever he got behind the wheel.

You see, chronic conditions are exactly that: Chronic. My naïve adolescent aim was that I could cure Alfie’s epilepsy within at least my lifetime, if not his, and so I have pursued a career as a medical doctor/in medicine. After being hospitalised over a weekend during his childhood, Alfie had, in fact, demanded that the seizures no longer be referred to as just that, and certainly not ‘attacks’, or worse, ‘fits.’ I proposed the idea in the back of a car journey that we thereafter refer to them as ‘flicks’ or ‘lightening bolts’ as something I had linked to the concept of photosensitive epilepsies being triggered by observation of flickering television screens or lights. The name stuck immediately, and, even now, to us, that is what they are. I even have the tattoo to show for it.