Meet Lisa Beckmann.
I am 28 years old and originally from a small town in Northern Germany. I am a first-year PhD student in American Cultural Studies at Justus Liebig University Giessen (Germany); my research focuses on the intersection between gender, sexuality, and disability in US eugenic forced sterilisation laws.
Favorite food: Pasta with pesto (well-suited for a student budget)
Favorite activities: Reading! And going to the gym
Inspiration: Various (awesome) disability-rights activists (I can’t name one!)
Imagine waking up with a searing full-body migraine, not knowing your name, where you are, or what year it is. Your tongue is bruised, and there is drool on your chin. What seems thoroughly unpleasant is only exacerbated by the fact that it did not happen in the secluded privacy of your home that would shield you from the staring and gawping – it happened in public, right in the middle of the cafeteria at the university where you study and work, at noon, when it is rush hour and there are a lot of people whose sole mission is to find an empty seat and dig into whatever the cafeteria offers today. You are hungry after a busy morning of lectures and classes. You don't appear to be an anomaly in the crowd – but you are. The last thing you can remember is staring at the spaghetti you ordered, and suddenly there is a specific weird feeling of things being a little bit unreal. It’s like the world has gone into slow motion and you are the spectator... until everything turns black and you have a tonic-clonic seizure.
That was 6 years ago, in June 2013, and what followed was the shock of being thrown (head first of course) into the world of chronic neurological illness. Even though the tonic-clonic seizure I suffered was my most noticeable, and in layman’s terms my most “dramatic” seizure, it was not the first one. In a way, my biography as a woman with epilepsy (because I firmly believe that gender can have a massive impact on how doctors perceive and diagnose chronic illnesses) reads like the standard biography of someone whose seizures go unnoticed for years until the brain decides that it has had enough.
From the age of 14/15 (after a relatively “normal,” epilepsy-free childhood), I started to experience absence seizures at school. What started out as the stereotypical “staring spells” (much to the chagrin of my teachers who saw me less as someone who needed medical help and more as the stereotypical lazy teenager), progressed into more severe absences: with my eyelids fluttering and my eyeballs rolling back (much to the entertainment of classmates and one of my teachers who liked to re-enact my seizures in front of the entire class). To my relief, the absences stopped around the age of 17/18 and my “journey” into the epilepsy world seemed to be over as suddenly as it began. I had grown out of my seizures like a pair of shoes that no longer fit.
However, after the breakthrough seizure in 2013 when I was 23 years old things started to get complicated; I found myself wading through muddy waters. After countless EEGs, neurologists, opinions, and rules about what I should and should not be doing (having my driving license revoked was the first cesura into what I had considered to be a “normal” life), diagnoses (ranging from dehydration, being overworked, stressed or just a "hysterical woman"), seizure types (my brain switched from generalised to simple-partial seizures in October 2015) the neurologists at a specialised epilepsy clinic finally came to a conclusion: I have structural epilepsy caused by a lesion in my left hippocampus. (Spoiler alert: They also see me as a candidate for surgery – this is I will explore once I am done with my PhD).
Knowing that I‘d finally found a neurologist who was willing to listen to me and take me seriously (both as someone with epilepsy and as a PhD student) came as a huge relief. I am still nowhere near being seizure-free (in a good phase I experience 1-2 simple focal seizures a month and in a bad phase it escalates into having multiple focals a week) but after two horrific experiences with Lamotrigine (Lamictal) and Keppra (Levetiracetam), I was switched to a medication that does not make me feel like a sea-sick zombie. (For the pharmaceutical-savvy of you: I am currently on Vimpat (Lacosamide), a drug which has been approved for monotherapy use in focal epilepsy in Germany).
Given my new consciousness about my epilepsy, it indeed seems like a lot of time has passed since the tonic-clonic seizure in 2013, when I felt an acute and throbbing sense of shame, embarrassment, and humiliation. While I cannot deny that there are moments when I feel angry and hopeless about my epilepsy – such as when I experience a focal seizure at the supermarket and people blame me for being “drunk,” or when I simply cannot get up in the morning because I had a seizure at night – there are also positives in my life; not despite, but because of the epilepsy. It takes a humongous amount of energy and focus (all of which goes unnoticed) to push through the fog in my brain but I know that studying for a doctorate is possible, even if it requires much more than the usual effort.
I am structured to the point of having to-do lists for about everything, ranging from the usual (grocery shopping lists, books I need for my research, quotes and summaries from the books and essays I have read, drafts for possible chapters of my PhD thesis etc.) to the medical (unusual side-effects, decrease or increase in my seizure activity, lists of how and when to increase or decrease my medications, questions I need to ask my neurologist etc.).
This is what living as a chronically ill PhD student is like: you live in two worlds at the same time; the medical and the non-medical, and; the usual and the (at times) unusual.
So after having dived head first into the world of chronic illness, I am only now beginning to realise that as I am coming back to the shore, seaweed stuck in my hair and sand between my toes, I have to accept life as it comes, (brain) wave by wave.