The Illness I Didn’t Know I Had for Most of My Life

I don’t remember the seizure; I was only 7 or 8 years old and generally those who experience absence seizures have no memory of the event afterwards. From what I had pieced together, I had been playing video games at a friend’s house. The friend was outside and so were our parents, having a general catch-up. My father, coming in to check on me, found me staring blankly at the television screen, the controller still in my hands. Understandably concerned, he asked if I was alright.

He described my response as robotic. I answered with a “yes, dad,” but in a monotonous voice and without even turning my head. He gently took the controller from me, picked me up, and put me on the guest bed. I was out like a light. I was awake again in half an hour, back to myself and with no memory of what had occurred.

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When the word “epilepsy” is used, it tends to conjure images of people falling down and experiencing violent jerking fits. This is one face of epilepsy, known as the tonic-clonic seizures or, more archaically, grand mal.
My parents took me to see the family doctor after the incident, and whilst he agreed I had experienced a seizure, he advised it was not an issue unless I had another similar event.

I never again had such a display of this other side of epilepsy, the absence seizure or petit mal. Yet over 15 years later, sitting in a neurologist’s office, I was officially diagnosed with generalized epilepsy.

During absence seizures, a person may appear to “zone out” or not be paying attention. Their eyes may be unfocused, they may twitch faintly and their responses, if any, slow or incoherent. Epilepsy may be further divided into the areas of the brain that it affects. With generalized epilepsy, the electrical firings of the entire brain are compromised. Partial epilepsy, as the name suggests, affects only a part of the brain.

Absence seizures have often gone undiagnosed amongst children as the symptoms are often misread as a lack of attention, boredom or misbehavior by the child. This has the potential to severely impact their education and mental growth. The neurologist explained this issue to me after he handed down his diagnosis.

“Well,” I said, “I was ahead of my grade for most of primary school. I took a test and was placed in an opportunity class for gifted primary students, and then passed a selective school test and entered a high school that ranks second in the state for the final year exams. I study law now and have a distinction average.”

I could almost see the specialist scratch his head in bewilderment. At last, he said, “Imagine what it would have been like without the epilepsy.” And I could.

Looking back, I could finally see all the tiny little clues that pointed towards the condition. Unfortunately, epilepsy can be exacerbated by, and therefore entangled with, other issues such as low blood sugar levels, stress and lack of good quality sleep. As a high achieving student, my stress levels and poor quality sleep were constant issues, and ones that I thought were causes in and of themselves. I was constantly having blood checks for diabetes because there was a family history and I could find no other reason to explain why my light-headedness often went away after eating. There is a family history of epilepsy too, but my symptoms were so unusual that no one thought to check. The neurologist himself admitted that he had first thought I might have been experiencing migraines.

I experienced dizziness and light sensitivity. Video games frustrated me. I would become mesmerized in busy places like shopping centers or marketplaces. Sometimes when talking to someone, I would have a sudden feeling like that my brain was full of white noise and all the words had fallen out, and my sentences were lost or the words difficult to pronounce. Sometimes it felt as though the world was a television screen that someone had oversaturated with contrast maxed out. I would find myself clutching bannisters, suddenly unable to perceive a stairway as a 3D object when walking down.

And yet somehow my brain had fought to manage these issues. By the time I was diagnosed, I had become able to continue talking to a person without them even realizing that my head felt like an untuned television, full of static. I walked down stairs using sheer logic, and then routine, even though I was unable to perceive them properly. I let my senses dim and withdrew into my mind in busy places to protect myself from the chaos of stimuli bombarding me.

None of this I did consciously. It was only when I was put on medication and forgot for a few days to take it that I truly realized how disruptive it had been. The light sensitivity, light-headedness and visual perception difficulties came back with a vengeance.

There is still much to learn about epilepsy, and more education to be provided to the public. The diagnosing neurologist told me I had a very strange form of the condition. The brain scans showed my electrical pulses firing chaotically, yet at the time I had been calmly answering questions asked by the machine operator whilst lights flashed unpleasantly in my face.

“This is abnormal brain activity,” the neurologist said, showing me a chart that displayed the wild spikes and waves. “Yet you were conscious and lucid, you say?” The success of the medication, and the impact of sleep, stress and blood sugar levels on the severity of my symptoms have supported the diagnosis of epilepsy. With so many variations in the way epilepsy manifests itself, it is very likely that there are many people in the world today who have the condition without even realizing it.

When people invite me out to the pub or to a concert, and I turn them down, explaining that I have epilepsy (and medication that does not mix well with alcohol), I am often met with disbelief. A question about whether I have fits usually follows. I am happy to explain the situation, but more education needs to be provided in order to dispel the assumption that epilepsy equals convulsive fits. Epilepsy can manifest as fits. But it can also manifest as light-headedness and visual problems. It can manifest as “zoning out” and a lack of responsiveness.

So I keep educating. If we met in person, it is likely that one of the first things you will learn about me is that I have epilepsy. It does not define me, but it is an important part of my life that I have learnt to live with, and others around me need to understand it.

And to anyone else out there experiencing a misunderstood condition, if you can, keep educating too. Use your lived experiences to teach the world. Pass the knowledge on.

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Gettyimage by: bilalcinar