Living Liminal: TLE 30 years on

My name is Kristiana and I have spent much of my three decades on Earth trying to keep my feet planted firmly in the ground. I was first diagnosed with "petit mal absence epilepsy" in the early 90's at the age of 6, though, my parents recall that I displayed "staring spells" as far back as 18 months old. To me however, they were "yucky feelings." And what more direct way to describe the sudden lurches into the upsidedown where a sandwich of random dreams and memories melted over the present moment? But unfortunately for 6 year old me, I wasn't able to succinctly describe these experiences to my neurologist. So, after an EEG and testimony from my parents, I was misdiagnosed and put on a hefty dose of Depakote. After 6 years of daily pills, occasional breakthrough seizures, multiple EEGs, and monthly blood draws to screen for Depakote toxicity, my neurologist determined that I had "outgrown" my seizures. And that everything would be fine thereafter. This was true, for a time. Despite the fact that I began to experience lifelong chronic depression from the age of 9. Despite the fact that I displayed symptoms of ADD since childhood but because of the notion in the 90's that "girls don't get attention deficit disorder," I wasn't officially diagnosed and provided academic accomodations until well into college. Despite the fact that I have an auditory processing disorder. And anxiety. And chronic insomnia. I was "fine" because none of those non-seizure experiences were at all related to my history of childhood epilepsy. Obviously. So I was only treated or seen to when each of those individual issues became so much of a problem, they interfered with my daily functioning. But somehow, whether it was through luck or just sheer drive to keep moving forward, I made it through. Then, at the age of 19, I had a seizure again for the first time in 8 years. I was in college at the time and had just tranferred to the University of British Columbia in Vancouver. Far from California and my family, I started experiencing those same sensations, the same sudden sharpening of reality followed by a rush of "dream" memories and butterflies in my stomach. Though I never lost consciousness, the seizures would leave me absolutely exhausted. So after almost 2 months of having seizures almost every week, I decided to withdraw from university and move home to California. During that time, I had begun doing lots of research and discovered that my seizures almost exactly mirrored those commonly featured in temporal lobe epilepsy. My new neurologist in California agreed, and then put me on Lamictal. The Lamictal decreased the frequency of the seizures, but it also left me feeling emotionally flat and completely unmotivated. I developed writer's block and everything around me to fade as I felt myself lose the ability to experience a full range of emotions. After two years of this, I decided that I'd rather go off the meds and risk the occasional jaunt into neurological purgatory so as to finally feel myself again. I was seizure free for two years, and then had another two seizures within one year. But I decided against going back on medication, because in all actuality, the seizures weren't particularly disruptive, they were just yucky. I've been off meds now for 10 years and seizure-free for 8. A success story? Perhaps, perhaps not. You see, the more research I do and the more the medical and academic communities discover about the brain post-epilepsy, I'm beginning to think that my TLE story is not over. And that it was never just about my seizures in the first place. I know am not alone amongst those with TLE who experience depression, AD(H)D, anxiety, auditory processing disorders, and chronic insomnia. Who are hypervigilant, hypersensitive, and hyperaware of how truly transitory and flimsy the normative concept of "reality" actually is. The temporal lobe plays a hand in almost all of this, and so, it's not a far stretch to suggest that all of these struggles most likely stem from those irregular discharges in my childhood old brain. It's a validating thought but I am relieved that I still had the wherewithal to seek treatment for my struggles in the absence of this explanation. And yet, what of the future? What happens now that I no longer have seizures despite not being on medication and somehow having escaped surgery? What happens now that I've started experiencing discernible lapses in short term memory? What does it mean that I don't remember most of highschool, or that I experience time as if it were crawling at a snails pace? Why do I feel like have lived multiple lifetimes in just 30 years? How long can my scarred brain continue to support me in this body? What I have found to be most helpful when struggling with all this uncertainty is to conjure meaning and symbolism within the liminal spaces I occupy. Whether it be through writing, playing music, or creating my own spiritual framework, building context beyond the limits of current scientific research eases the existential angst. Choosing a purpose and sticking with it has helped soothe my fear of mortality, that I may one day lose my ability to recall my past and store new memories. And until the the fields of neurology and neuropsychology can can effectively explain and answer for the lived experiences of us TLE'rs on the ground, I suppose I will continue living as I have. With feet planted firmly in the ground.