X Epilepsy
My daughter, Salwa, came down with epilepsy — out of the blue, like people do, at age 11. It started in July of 2010, a month after my father died. We were staying with my mother in Columbus, Ohio, sleeping in the guest room next door to her room. I was awakened a little before dawn, around 6:30 am, sensing movement beside me in the bed. I heard Salwa say, “Mom, open my eyes!” I rolled over and saw that she was lying with eyes wide open, and beginning to look a little out of it. Then her head turned to the right, her right arm started bending and jerking, and she made noises in her throat. I sat up and leaned over her, touching her and calling her name. Wondering to myself, “What is happening? Is it a stroke? A heart attack?” I leaped out of bed and ran to my mom’s door and knocked. “Mom — can you come quickly? Something is wrong with Salwa.” My mom, a retired physician, very fit at 78 years, quickly got out of bed and came over. She sat on one side of the bed and I sat at the foot. Mom’s medical detective skills had automatically kicked in. By then the writhing was slowing down. We could see some foaminess at the side of Salwa’s mouth, and her body began to calm down. “I don’t think it’s a stroke or a heart attack, but I’m not sure what it is.”
It turns out that lots of physicians have never witnessed an epileptic seizure. And most non-medical people never see one either. We are taught that seizures are dramatic clonic-tonic, formerly known as grand mal, with major body movements and loss of bladder function. Or maybe we’re taught about absence seizures, formerly known as petit mal, where people blankly stare for a few seconds. But most people don’t know about partial or complex partial seizures, now referred to as focal onset impaired awareness seizures. This is what turned out to be part of the description of the type of seizures she has, along with some that would generalize to both sides of the brain and become tonic clonic.
She had a less intense seizure several hours later, and a very brief one in the afternoon at the Columbus children’s hospital. Then she had no more seizures for about two weeks, while eating cereal before we would catch a flight on August 5 to Florida for my dad’s memorial service. We were waiting for an appointment with a pediatric neurologist the week after the service. An MRI in September found a malformation on the left side of Salwa’s brain — an area with abnormally small and many folds, or gyri, of the brain. This is a phenomenon called polymicrogyria. Over time we learned that this malformation eventually results in seizures, sometime between puberty and early adulthood. We also learned that Salwa had been having auras since early childhood, experienced as hand tingling and sensations of her body parts being different sizes. It took the good part of her first year of middle school to find a combination of medications that helped. They helped for a while, and then not so much. Through this three years of not so much, Salwa has tried to be in college in north Texas and maintain some kind of a GPA. Slowly she had to reduce the number of classes, had a few trips to an ER having seizures in parking lots and at bus stops, getting to know the EMTs in Denton, Texas, very well. When the pandemic erupted, we brought her home early for spring break, and she never went back. For the past 18 months she has been on the path to be tested and approved for either a brain pacemaker that could calm the brain, or removal of part of the problem area, or both.
In the next series of posts, I’ll share about Salwa’s epilepsy journey, and the experiences of those accompanying her. The prompt for starting this series of posts is that after three-plus years of worsening symptoms, following about six years of relative relief from them, Salwa is finally getting to have surgery that may stop the seizures. Or at least make them much less disruptive. It has been exhausting. It has been challenging. It has been heartbreaking. It has been inspiring, also, to see her continuing to rise from what amounts to the ashes of her distress time and time again. And we are hopeful for better days.
The past ten years have seen some rough patches for us, for Salwa, her family, and her close friends. We yearn to cross epilepsy out of her life — hence the title of this post and a separate blog, X Epilepsy, or xepilepsy. May it be so.