The recent publication of Helen Stephens’ photo diary in the Guardian affected me in a very personal way. The images, which are juxtaposed with her reflective writings, show Stephens in a variety of post-seizure states. They are impactful, human, and brave, and I commend her for her willingness to be so public about her experience with epilepsy.
I was bothered, though, by the revelation in the final entry that her boyfriend, the photographer for the project, left her after witnessing a particularly upsetting seizure during a holiday that they took together. It’s understandable, I guess, that he—or any partner of someone with epilepsy—would struggle to cope with the realities of the illness. I realize that my husband, who supportively and non-judgmentally makes sure that I’m safe during seizures, helps me when I’m postictal, accompanies me on ambulance rides, listens to me complain, and spends hours-long stretches with me at the hospital, is quite possibly in the minority (as I half-jokingly said to someone when comparing him to Stephens’ partner, “Not everyone can be a saint”). But the fact that a person who surely understood what it means to be with an epileptic, an active participant in and indeed initiator of a endeavour like this one, would decide to end a relationship based on the severity of seizures upsets me, not because I think he did anything wrong, necessarily, but because it might say something about human instinct, about self-preservation. It’s not that I question my husband, family, or friends’ desire to help or be there for me when I’m not in a great place emotionally or physically (or both, much of the time). It’s just that it plays into one of the fears that I try to convince myself are irrational.
All this makes me respect Helen Stephens all the more. Her story will go a long way in educating readers of the Guardian and in making epilepsy more relatable to people for whom it is a distant, purely clinical condition.
(Excuse the slapdash prose of this entry. I’m working on working more; productivity for the win!)