Brain Storm
I am being told that, without a doubt, Luz has a serious neurological disorder.
“It’s epilepsy,” says the pediatric neurologist. “She had a seizure during the EEG. We recorded the neurological activity, but also video of her seizing.” He presses play. The room is kept dark for the test, so the infrared film they use makes her eyes look like bottomless black holes. Her face and body twitch. Her eyes roll and pitch to the far right, like they are trying to climb out of the corners of their sockets. It is unbearable to watch. But I have to remain expressionless and calm, because she is sitting right next to me, witnessing herself being overcome by a burst of dark electricity in her brain. I can’t imagine how betrayed she feels by her own body.
***
When this all started, Luz was nine and standing near me at the kitchen sink, telling me a story. Abruptly, she went silent. And white. When people say, “all the color drained from her face” it seems like an exaggeration. Until you’ve seen someone turn into a ghost before your eyes.
“Honey, are you ok? Luz? Answer me. Are you ok?”
She said something that was English but made no sense, and began to sway, staring at me, zombie-eyed. I eased her into a horizontal position on the carpeted floor, and screamed for her sister, “Viv, Viv, get down here! Viv, help!”
Viv came down the stairs and looked at us, as I struggled to understand what was happening. Luz was breathing. Her heart was beating. She didn’t seem to be in pain. But she stared at me from far away and could not be summoned back. Her eyes began to droop and close. Was I losing her? Was she dying?
Without being asked, Viv picked up the phone.
***
The firemen arrive first, in full regalia—boots, heavy jackets—big clothes to save this little life. Then the EMTs. She floats at the edge of consciousness.
The paramedic says we have to go to the hospital.
“OK. Well, I’ve got to get my bag and my keys and grab a jacket for Luz. It’s cold there. We’ll go asap. Thanks for your help.”
“No, m’am. I mean now. In the ambulance.”
I look at him blankly. My brain cannot process any of this.
“Mommy, my head hurts…” her words are barely audible. Is it an aneurysm? Will those be her last words?
I hold her hand in the back of the ambulance, sirens screaming. Watch as the paramedic inserts a heplock. I wait for tears, for the big recoil, when he jabs the large bore needle into her vein. But she does not flinch. Her brain is not communicating with her body well enough to process the pain impulse.
I think back to when she was born. So eager to get into the world, she is almost delivered in the car. Such an easy baby. Her big blue eyes quick to close at naptime. I see her when she is two, playing in the park, sunlight glinting through her golden curls. She runs to me. “Luz, what do you want to be when you grow up?” I ask her out of the blue. She looks at me, considering my question, then says, “A rainbow.”
They send us home from the ER after many hours of waiting punctuated by an occasional test. When we leave they say only, “Watch her.” No answers. No strategies. Just Watch Her. The appointment with the pediatric neurologist is four days away. We have to wait because where I live there are only two pediatric neurologists in the entire state. Two. So, I don’t sleep for 96 hours. I watch her.
***
Dr. Shim shakes my hand. He is soft-spoken, competent, kind. He says it seems like an “absence seizure with an atypical presentation.” He reports that her preliminary EEG was very abnormal. Luckily though, her MRI came back clear. “It’s not a brain tumor,” he says, smiling encouragingly. His smile tells me I’m supposed to feel relieved. But I can’t even grasp that we are talking about brain tumors in relation to my child.
“So, then what caused it?” I ask.
“We don’t know and may never. Sometimes these things just happen.”
“Will she have more?”
“There is no way to know. For now, we wait and watch. An official diagnosis doesn’t happen until after the second seizure.”
“An official diagnosis of what?” I ask.
“Epilepsy,” he says.
More watching and waiting. I wonder if I can I survive if I never sleep again. I wonder how I will ever be able to let her go back to school, to go out to play with friends, even just to be in another room.
I get out to the waiting room where Luz has been relegated during the serious part of the talk with the doctor. “What did he say, Mom?”
“He said it’s not a big deal unless you have another one. So you are just not going to have another one,” I say.
And she didn’t….until she did.
***
Fifteen months later, back in Dr Shim’s office, he broaches the subject of medications. “It’s typical for parents to go this route now.”
I ask what happens if we don’t put her on the meds.
“Well, every time she does have a seizure, there’s the possibility it could be damaging her brain. So if she’s on a medicine that helps prevent them, we could be preventing all those little assaults that could add up to long-term damage. Also, if she ever has a long, uncontrolled seizure, she could suffer permanent brain damage or even die.”
***
I walk out with a prescription in my hand, but don’t want to fill it. Here is a partial list of the “more common” side effects: change in vision, clumsiness, crying, feeling of constant movement of self or surroundings, mental depression, uncontrolled back-and-forth and/or rolling eye movements. A couple of zingers in the “less common” category: trouble with walking, bloody urine, agitation, seizures. Seizures? Really? WTF?
I look on the internet and start discovering dark things, mostly about kids with uncontrolled seizures who can’t participate in life in any way that’s approaching normal; like the girl who has 100 seizures a day and has had half her brain removed. I also find out the blackest secret: SUDEP. Sudden Unexpected Death in Epilepsy. In SUDEP cases, no other cause of death is found in an autopsy. One day, the epileptic person just wakes up dead.
I drive to the pharmacy.
***
It’s hard to be a teenager with a diagnosis that makes you feel so different. After her first day back at school, she comes home and tells me that some boys in her grade walked by her at lunch twitching their bodies, making grunting noises, then laughing hysterically. I imagine beating the boys to death.
The doc has given us this list of precautions: No unattended baths. No ocean or pool swims without an adult directly watching. No climbing or heights. Be cautious with stairs. Don’t go too far from civilization for awhile. No strobe lights. Watch her when she’s eating. Since there’s a chance of her losing control of bowel and bladder during a seizure, keep a change of clothes with you at all times.
I tell all the adults in her life—teachers, coaches, parents of her close friends. I build a silent army around her, ready to save her if her brain short circuits at an inopportune time. And then I try to let her live her life.
The first birthday party she gets invited to days after her diagnosis is a swimming pool/disco party replete with hordes of girls jumping in and out of the pool and strobe-lit dancing to ‘80s classics in the blacked out family room. The Universe has a fucked up sense of humor. I let her go but I feel like I might die.
***
One day, Luz, Viv, and I play hooky from school and work. We go to a bay on the North Shore of the island, surrounded by craggy green peaks and a rock formation that looks like a lion perched on the mountainside. We have the beach completely to ourselves. Viv and I loll on the sand. A dozen feet away, we watch Luz who is floating, letting herself be gently pushed around in the tiny shore break. Her body rolls with the waves, her head above, then below the water. It’s Viv who realizes that Luz is having a seizure. She was starting to drown in front of me and I thought she was playing.
That night, I am in my room raging silently. “Why her? Please, God, take it away from her! How will she live? How will we live?” We are victims of this terrible cerebral tyrant, all three of us. While the kids are asleep, I kick and cry in my bed like a toddler.
I pick up my computer to distract myself. To forget this singular curse for a minute. I turn to my favorite British tabloid to read about the struggles of botoxed, vacuous assholes in $5,000 shoes. But instead my eyes are drawn to the story of this little girl in a southern state, whose mama took her to see her cousin play in a high school football game. While the mama watched the game in the nearby bleachers, the girl joined a posse of kiddos in the grass nearby. After the game, they found this 6-year-old baby naked and dead in a gully 50 yards from the field. Someone had stolen her as she played just a few feet away from her family.
No matter what you think is wrong with your life, it can always be worse.
***
There is no room for the poisonous self-pity I wrestled with that night. We go to the ocean, but she has given up baths. She plays on the water polo team. She goes up and down the stairs in my house, alone. She takes her medicine religiously. She never carries a change of clothes. She catches the bus. People help me look out for her. I try not to let her be held prisoner by this disease and I try not to let myself be held hostage by fear.
And there are things she still does not know. She doesn’t know about SUDEP. She doesn’t know that she may never be able to get her driver’s license. She doesn’t know that pregnancy and motherhood may be very complex for her. She doesn’t know that she may never be able to live independently. I haven’t even told her the side effects of her daily meds. Why tell her any of it until I have to? She’ll ask or Google it all someday. Until then, it’s like the CIA: She stays on a need-to-know basis.
I ask God to keep her safe, but I put my hope in science and innovation: self-driving cars and brain implants, monitoring devices and seizure dogs. It is quite plausible that all the issues I worry about now won’t be issues at all by the time she is 25.
When you mother a child with a serious illness, it is natural to look for meaning, to search for lessons. I’m not in a place yet where I can offer bromides about gratitude or acceptance or courage. Part of me is still furious that she has to carry this; that we all do.
But there is one thing I’ve internalized in the very deepest sense: I take nothing for granted. Nothing. Not one thing. Not the breath in her lungs, or the water we drink, or the earth beneath our feet. I know in my soul that every day, every moment with her, with the people I love, is a gift. Right now, that seems like enough.