It’s not quite dawn. I slide out of bed, quickly wash up, dress, and, of greatest significance, put on my wristwatch. I unlock the front door, flip on the outside light (to identify our house) and slip the cordless landline into my right pocket, my cell phone into the left. Experience has taught me well. I begin every morning this way… just in case.
Juvenile Myoclonic Epilepsy (JME) has been waging a war with our daughter’s brain since she was eight. Medication is her only defense. Over the past six years, her anti-epilepsy drugs (AEDs) have developed a pattern: they work in the beginning, then they stop. The seizures return, the doctor increases the dose, the drugs work again. Then they stop. The seizures return and the dance is repeated. Until now.
She’s reached maximum levels of her current drugs. She’s had four grand mal seizures in only eleven days. If one more seizure occurs, we’ll be forced to make a choice: either add a third drug to the two she’s already taking (providing only a 10% chance for improvement) or, admit her to the hospital’s epilepsy center for ten days, where she’ll be weaned off current medications—then introduced to a new one. The second option guarantees more seizures— lots more. Additionally, she might get through the withdrawal and start the new drug only to find that it, too, doesn’t work. Or, it might work in the beginning…then stop. This is a parental choice from hell.
Her current meds have side effects—all AEDs have side effects. The drugs increase her daily emotional peaks and valleys. They cause her to feel exhausted most of the time. She occasionally has difficulty with social cues, and often has difficulty with multi-tasking as well as processing some types of information and focusing for extended periods of time. There are also issues with memory. Such things are likely due to the extremely high doses of her current medications—drugs she’s been taking because they have the least serious side effects. But side effects pale when compared to a lack of seizure control. In order to try to stop her seizures, her doctor must find the right AED, or the right combination of AEDs.
Our daughter doesn’t have ‘minor’ (partial) seizures. All of her seizures are ‘tonic clonic’ (i.e., grand mal.) Her seizures are fierce, disturbing and, to her family, heartbreaking. Equally frightening is her behavior when she is postictal (the period right after the seizure has stopped, prior to the person fully regaining consciousness.) She’ll try to climb walls, or arch her body in odd ways. She’ll cover a large area, still liable for sustaining injuries. Her muscles and body look stiff. Her eyes, often bloodshot, look right at us, but she doesn’t see us. Whenever ‘it’ happens, our daughter—our youngest child—temporarily disappears.
Most frightening is that when a seizure strikes, she gets no warning. In October, she fell head first, from the top of the stairs all the way down to the entryway. Her body shook ferociously as she bounced down each step until she landed on the hard floor at the bottom. Blood trickled from the corner of her mouth. Horrible guttural sounds echoed as she gasped for breath. I frantically yanked the landline from my pocket and called 9-1-1. I closed my eyes for a split second to hold back tears as the image of her fall kept replaying.
The dispatcher stated that the paramedics were en route. Our daughter remained face down, still seizing. I hadn’t done what I was supposed to do. I hadn’t checked my wristwatch! I was supposed to be timing the seizure—one should ALWAYS time a seizure! I’d been so overcome that I’d forgotten to watch the infernal second hand move as if in a time warp. During a seizure, my wristwatch mocks me by elongating each fraction of a second. (How is it that years rush by so quickly while each minute of a seizure lasts a decade?)
I jumped into first aid mode, a protocol I’ve been forced to learn and have used many times. I moved objects out of the way so she wouldn’t hurt herself by banging into them. I grabbed a nearby sweatshirt, folded it to use as a pillow and gently placed it under her head to avoid further trauma… and then I froze. I couldn’t gently turn her onto her side to help naturally open her airway and allow her mouth to empty. I dared not move her because I had no way of knowing if she’d broken anything. I spoke softly, telling her that everything would be okay. No one really knows whether a person experiencing a grand mal seizure can actually hear on any level. (But I do this anyway.)
The paramedics arrived just as her thrashing stopped. She was postictal and started her ‘after seizure’ movements. They slipped the clear oxygen tubing gently over her head, aligning the two openings with her nostrils. I conveyed what had happened. Finally, slowly, she began to come around. It was time for the questions.
“Can you tell me your name?”
“When is your birthday?”
“What school do you go to?”
“What grade are you in?”
Miraculously, she had not broken her neck or any other bones. (Why did such wonderful news make me burst into tears? The paramedics have been to our house many times, and I’d always managed to maintain my composure. This time, my heart was pounding so loudly, I was surprised they didn’t hear it. I stood off to the side, held up by the wall, completely choked up and overwhelmed and at the same time, grateful and embarrassed.
When she was finally coherent, they helped her to the couch. She then slept for hours. Her brutal seizures tax her body to extreme. Afterwards, she’ll sometimes have a migraine, sometimes throw up and is always wiped out for at least a day. A doctor once told us that her type of seizures originate deep within her brain and are more taxing on her body than if she’d just finished the most grueling of all triathlons.
Witnessing one’s child having a grand mal seizure, whether it’s the first, 15th or 200th time is terrifying. Our inability to prevent it, stop it or do anything remotely beneficial makes our world spin out of control. We stand by helplessly, drowning in parental impotence, waiting for the seizure to end. Conversely, her world renders her unconscious while some inexplicable force resembling an earthquake takes over her body.
As parents of a child with difficult to treat epilepsy, it’s been especially hard to accept that there is no cure—that the condition has been around since the dawn of time, that millions of people are affected—that every five minutes, another child in the United States is diagnosed. We were shocked when we learned that the mortality rate among people with epilepsy is two to three times greater than that of the general population. We were further shocked to learn that the risk of sudden death is twenty-four times greater. Epilepsy is the second highest cause of death amoung young people. Our daughter is already part of the impersonal numbers that make her a mere statistic: we don’t know the cause of her epilepsy (which happens in about 1/3 of all cases.) She didn’t outgrow the absence seizures, which resemble daydreaming. Rather, her staring seizures turned into grand mal seizures, lasting longer and longer. But the hardest part of all has been learning about the enormous stigma that still exists today, a decade into the 21st century. It stems from a lack of knowledge and understanding among the general population.
Throughout the ages, many believed seizures to be a sign of witchcraft or the devil. In the late 1400’s and early 1500’s, an estimated 100,000 women suffering from seizures were tortured or killed, all due to fear. In the 1800’s, people with severe epilepsy were placed in asylums where they were isolated because of apprehension that the condition was contagious. Even as recently as the early 1900’s, some U.S. states had laws forbidding people with epilepsy to marry or become parents. Such unfounded fright has hindered progress and forced many who suffer from epilepsy to hide their condition. Epilepsy is the proverbial black sheep of all neurological conditions. Though major strides and medical advances have since taken place, doctors have told us that a cure is still lightyears away— that no cure will not be found in our daughter's lifetime— and that she will live with epilepsy all of her life.
The sun will soon rise and our daughter’s alarm will sound, waking her for school and signaling the start of the most likely time for 'it' to strike. I enter the kitchen and quietly place the newspaper on the table. I feed the dog, pour a glass of orange juice and set it at her place, anchoring the crisp, clean napkin that holds all of her pills. I’m superstitious and compulsively meticulous in arranging them. It’s ridiculous, I know. (But I do this anyway.)
Her radio blares. I listen for the telltale creak of her bedroom floor. She’s up. I fight my urge to go upstairs to check on her. “Quit treating me like a baby!” she’d yell, if I dared. But I remember when she was… when I could make things better by holding her, rocking her, singing to her, kissing her. She’s fourteen now. She’s taller than me (and proud of it) and wears a larger sized shoe.
The aroma of fresh coffee permeates the house, signaling the day’s official beginning like a bugler’s Reveille. As her cereal cooks, my adrenaline surges. Ninety-five percent of her seizures have occurred within the first 75 minutes of her awakening. I figuratively hold my breath. I glance at my wristwatch to see if we are running on time. Its face—specifically its second hand— taunts me.
She wanders into the kitchen and plops into her chair. I smile, secretly scanning for warnings. No eye fluttering! Her unusually stunning eyes with the dark circles beneath are steady. “Morning, Sweetheart,” I say. “Hot cream of wheat cereal with chocolate chips coming right up.”
It is a good morning. She’s chatty as she eats her breakfast, then places her dishes in the dishwasher, bolting upstairs to fix her hair. She doesn’t seize on her bedroom floor for an extended time like nine days ago, nor does she seize in her brother’s room, where just four days ago she fell against the door, preventing us from reaching her. Today is a good morning. We don’t have to face ‘the parental decision from hell.’ Not yet.
She grabs her backpack and violin. I attach the dog’s leash and we pile into the car. I drive her to school, silently praying that this beautiful day will last— that she will feel good, enjoy her classes, learn and have fun with her friends…and that, please God, don't let her have a seizure, especially at school.
Our daughter— so brave, so determined. She once told me, “You know, Mom, it’s much harder on you and Dad. You have to see me have a seizure, but I don’t even know it’s happening.” Our daughter—so strong, so inspiring. She refuses to let epilepsy define her. I watch through the car window in awe as she enters the building. She and others like her bring new depth to the meaning of courage.
Today is a good morning. Though epilepsy has turned all of our lives into a perpetual marathon, united we stand, determined to win.