by Terese Svoboda
My brother would roll his eyes back, shout applesauce or give me your hair, and fall to the ground in front of, say, the cheerleading squad, only to return to normal, dazed and confused, pale and clammy, with a big blank in his brain five minutes later. One in a hundred Americans suffer from incurable epilepsy, one-third of those untreatable. None of the many drugs prescribed for my brother’s epilepsy consistently prevented his seizures. The medication was never quite right; he was growing and his chemistry constantly changing, along with the pharmacology. Despite the disease’s very public manifestations, my parents’ approach wasn’t very helpful: if you don’t acknowledge the problem, it doesn’t exist. While my father wrestled my brother away before he fell to the floor and “things got out of hand,” we were supposed to act both surprised and unconcerned.
We tried. In high school, my tack was to pretend he didn’t exist. My sister, twenty months younger, remembers me ignoring her in high school too, so maybe it wasn’t so personal. My brother had only one friend, a fellow acne-pocked boy who barrel-raced with him in rodeos, and wasn’t too cruel. Suga, my brother’s quarter horse, wound around the obstacles with equine annoyance, and frequently tried to toss my brother from the saddle. Even Sugar knew. By not acknowledging my brother’s disease, or at least telling his siblings what to do when he was thrashing around and foaming at the mouth, my parents left us terrorized by the possibility of his collapse, afraid of him and for him. We weren’t even told to prevent him from swallowing his tongue, although now I think that doesn’t happen, it’s just another old wives tale people like to tell witnesses in the helplessness of a seizure. That we pretended he was just fine branded us as collaborators in our small town – he might as well have been contagious. The cost of epilepsy in a family is always more than just the patient’s suffering. I, for one, felt angry not being able to do anything, guilty that I avoided him, embarrassed that he behaved so weirdly, and perversely envious that he received so much attention from my parents.
Aristotle believed food caused the seizures, creating “vapors” that reached the brain during sleep. Did he make this determination while scrutinizing his teacher Socrates during one of his spells? The Renaissance astrologer Paracelsius compared a thunderstorm to an epileptic attack, appropriately associating seizures with the discharge of electricity. In the 17th century, a scientist named Stahl began to think of seizures as a reaction to the soul. During a really violent seizure, the soul does seem to be trying to wrench itself from the body, and for centuries epileptics were viewed as possible shamans. To call my brother’s seizures “spells” as my parents did, suggested a magical experience, and indeed, my brother did experience the otherworldly while unconscious: a blank. Later theories about irritations of the brain coincided with experiments on live animals twitching grotesquely, and because of the uncontrolled jerking brought on by orgasm, masturbation was also believed to be a cause. “Epileptic” itself means “to be seized,” suggesting something from the outside produces this shaking, reinforced by Christ in the Gospel when he declares that epilepsy was an evil spirit and drove it out of a ten-year-old. Many cultures decided that opening the head would allow those evil spirits an exit. In 1960, my mother nixed the specialist’s idea that a lobotomy was my brother’s best bet. She had hope. After all, Teddy Roosevelt was an epileptic, Neil Young, Prince, not to mention Einstein, Poe, Julius Caesar, and Thomas Edison. But the only thing that this list truly proves is that some sufferers find a way to thrive despite the disease – or their cases are not so severe.
When I was a teen I accidentally took a pill from my brother’s medical cornucopia the day before I was to debut as the ballerina in our high school’s production of “You Can’t Take It With You.” I thought the pills were for his sore throats. Why I imagined my brother had a sore throat every day is curious, but I had them frequently. Since he was only eleven months younger, surely he was susceptible to mine. I also had stage fright, and had no idea the pills would make me dizzy. The result was that I couldn’t stand up, let alone perform on toe the two turns the part required. I was so relieved to have escaped opening night that I should have thanked him.
I didn’t. When we were younger, he would beat me up, careful to leave no marks. My mother always reminded me that his I.Q. was higher than mine, despite all his handicaps, which included dysgraphia and dyslexia. It’s bad parental policy to pit one sibling against another. I was vengeful. I proved to my mother that he couldn’t read by choosing a random page in the third grade reader. Without reading it front to back, he had no idea what the words meant – he had memorized the whole thing. Eventually six feet tall on a thin but muscled frame, with bushy brown-hair and occasional red sideburns, he was hesitant in speech and gait, which increased his Frankensteinian demeanor of a face swollen from medication – yet dogs and children couldn’t resist him.
My mother insisted that his epilepsy was her fault. The maternity ward required a doctor to be present at his birth so the nurse held her legs together – such agony – while they waited for the doctor. He brother arrived brain damaged because of oxygen deprivation in the birth canal, or so my mother had decided. Whatever caused it, my parents thought by not talking about it, he would grow up without stigma. They were especially hopeful he would be able to get a driver’s license, a crucial milestone in a teenager’s life in a town where there was no public transportation. I would have thought that that particular privilege might be a danger to him as well as everybody else, but he managed to pass the test. He shared the family car with me and my sister, and didn’t drive much those first two years. By the time he was eighteen, he had saved up enough money to buy his own car. Two weeks later, he totaled it. He later totaled farm equipment, he totaled the family car, he eventually totaled anything he drove. He had a cousin who had the same record, as did the cousin’s daughter, suggesting that genes might also have been involved. He also had what is called “absence seizures,” staring into space for several long seconds without affect. Most teenagers go through something similar whenever an adult walks in the room, but of course, you can’t have seizures, absent or not, if you’re driving.
He became paranoid, understandable when parts of your life disappear while you’re unconscious, and for so long no one seems to be telling you the truth about why. Epileptics are three times more likely to have this problem than anyone else. It became hard to have a conversation. Counseling? The closest shrink was three hundred miles away, and the shame attached to seeing one was nearly equal to having a disease that discouraged driving. He also had anosognosia, which means he denied anything other than the “spells” was wrong with him, and resisted treatment. In the future, maybe something like the iWatch will lessen this paranoia by informing the epileptic where he is when he comes to, and other pertinent details that escape the brain in a seizure.
After three years of trying to pass classes in college – seizures often erased everything he studied – my brother moved to Denver, where he worked on construction sites and other near-homeless endeavors. Finding it increasingly hard to get around without a car, he gave up and worked for my father. Cleaning out an auger, he hit a live wire with the pole he was using to poke at the feed. This was certainly not a smart move – was he having a seizure? – and he electrocuted himself, falling twenty-five feet to the ground. My parents felt he was old enough to recover on his own –or they wanted to keep his accident a secret? – and left him in a hotel near the urban hospital where he knew no one. For weeks.
The last time he had a spell in my presence was in a small museum in Maryland. He fell to the floor and his eyes rolled back and he became very stiff. The guard rushed over to try to help but the seizure passed quickly. He sat with his back to the museum wall, very pale and disoriented, but, determined to wrest something out of his visit, stood up and toured the museum all over again. Don’t tell anybody, he said as we left.
It was another big secret why he died. I was teaching in Hawai’i when my sister called to say my father had found him dead in his apartment, age 41. What? His heart stopped, said his official death certificate. Doesn’t everybody’s heart stop when they die? I reviewed my diary entries written near the date of his death, and all I found was mystery – nobody knew what had happened. Thirty years later, my sisters said of course he died of a seizure caused by his recently purchased hot tub. It’s true that heat can trigger a seizure but the real danger in a hot tub is drowning during a seizure, and he did not drown.
Although my brother had a girlfriend, he lived alone. Allergic to almost everything on the family farm, wild or cultivated, his eyelids often swelled to just slits when the pollen was bad, which didn’t help the facial disfiguration caused by his medication. I hardly recognized him in his casket when his body was no longer fighting the outside world, not to mention the wild play of electricity in his head. After he died, my parents were proud that he had finally paid off his medical debt from his electrocution.
Two years after the release of Dog on Fire, the novel I spent a lot of the three decades writing and rewriting about the mystery of his death, I found a CDC website headlined “Sudden Unexpected Death in Epilepsy” or SUDEP. I have searched before for causes, I have asked many a professional and nonprofessional what could have happened to him. The SUDEP syndrome has been known for the last hundred years but obviously is not well-known by forensic practitioners who, as in the case of my brother, found nothing in particular wrong with him. One in a thousand epileptics die for no apparent cause, perhaps because of breathing changes or abnormal heart rhythms, or a seizure – which leaves no trace after death – can occur when the epileptic’s airway is covered or obstructed, leading to suffocation. He was found wedged between two pieces of furniture. Increased risk of SUDEP occurs when the epileptic has seizures that start early and often and over many years, misses doses of medicine and drinks alcohol. Check, check, check – my brother’s profile exactly.
Do writers turn to anonymous readers because those they need to talk to aren’t willing to listen or because they are too afraid to talk to the people they love about what they fear most? My brother spent a week with me once in New York City. Living alone in a tiny town in the Midwest, he didn’t really like the noise and bother of metropolitan life and avoided going out, although he’d paid for the air ticket with wages he’d successfully tripled investing in stocks. Eventually no amount of teasing or alluring promises of grandeur could get him to consider even a walk around the block. It was impossible to pierce his closely held persona, trapped in paranoia.
Who was he? He had kind eyes.
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