People around the world gather to raise awareness about epilepsy on March 26, which we observed two days ago. Known as Purple Day, this day has held special significance for parents like me.
In fall 2018, our 1-year old daughter began having seizures, except that my spouse and I didn’t recognize them as such at first. We attributed our daughter’s “episodes” — as we called them then, mostly for the comfort of other people because “seizure” seemed too extreme, even taboo — to things such as dehydration or teething.
While these circumstances may have played a part, there was undeniably something firing in her brain that resulted in what the pediatric neurologist later termed “electrical discharge” and made her susceptible to having seizures.
Leading up to a diagnosis, we endured a handful of excruciating nights at Tucson Medical Center. As our daughter underwent a series of tests and probes by each nurse and hospital resident, a barrage of questions fired in our own brains: Was there an unknown history of neurological disorders in either of our families? Could we continue working full-time and be away from our extended families?
The doctors launched their own set of inquiries: Did something harmful happen during pregnancy or childbirth? No, I had two completely healthy, uneventful pregnancies. I delivered both of our children naturally without any medication or intervention. My overall positive experiences of pregnancy and labor had always served as a cornerstone of my confidence; being questioned about them now seemed like a violation, undermining my confidence as a mother.
As an anthropologist who studies people’s experiences of health and illness within broader structures of inequality, I’m sensitive to the ways that the health of our own bodies and the bodies we reproduce are molded by conditions beyond our control.
Nonetheless, I struggled to hold onto this perspective while sitting with the possibility of a serious illness for my child. It was much more appealing to blame myself in one way or another, perhaps because if the cause of the problem was within the realm of my control then the same could be true for a solution or treatment to the problem.
Our daughter was eventually diagnosed with “partial epilepsy” and prescribed anti-seizure medication. She’s not had an “episode” since starting the medication, giving us the privilege of almost being able to forget that anything ever happened.
I would be lying, though, if I said that I’m not sent into a panic every time I hear her older sister yell her name from the other room. Will we find our baby girl face down on the ground, pale, unresponsive and frozen in her own panic? Will the medication be enough to control her symptoms? Will she “outgrow” these episodes as suggested by so many health professionals?
Over the past several months, we have received a number of messages from friends and family along the lines of, “We can’t even imagine.” Though they mean well, their words tend to reinforce our feelings of social isolation. Is it really so unfathomable that a serious child illness should afflict their families? Are my spouse and I now parenting outside the realm of “normal”?
As it turns out, more than one-quarter of parents in the United States have children who suffer from chronic illnesses. Sadly, our society has a long way to go in providing the support that these families need.
Moreover, the children in these families do not need our depression and self-pity; though some may peg them as “different,” they deserve every possibility in life.
Megan A. Carney is a sociocultural and medical anthropologist. She is an assistant professor in the School of Anthropology at the University of Arizona and a Public Voices Fellow with The OpEd Project. Follow her on Twitter @megan_a_carney or email her at email@example.com