Fiction: A Bowl of Lightning by Hannah Brown

Photo by Warren Wong.

“Was the Beast mean?” Oren asks, and I know he wants me to read him Beauty and the Beast, the version in his Disney Princesses book. We have already read it three times today, but at least he isn’t asking for water. We’re waiting for him to have an MRI.

“At the beginning, the Beast was mean,” I say. “But then—“

“—at the end he turned into a handsome prince,” he says.

“Why did he change?”

“Because Belle loved him,” he says. “I’m thirsty.”

“You can have water later, after the test.”

“When?”

“After the test.”

He throws a ball up and down. I glance around at the couples who fill the room, also waiting for MRIs, hoping that they won’t be annoyed with Oren, who really needs something to play with as he sits here. They all look so miserable, so old and defeated, they don’t notice a thing. Most of them probably aren’t much older than I am. Do I look that bad? I push away the shallow thought and turn back to Oren. He knows about tests. He’s had lots of them. This one is because he started having seizures while he was taking cannabis oil. It was meant to calm him down. Everyone else whose autistic kid takes cannabis oil has some miracle-cure story, it seems. But Oren became more and more agitated when he was on it. When he was home for the weekends, he never seemed to sleep. At night, he screamed. I told the nursing staff in his special-needs community, it was impossible to reach the doctor who had prescribed it. They told me to wait a little longer. I waited. His meltdowns became more frequent and more violent and so much harder to deal with now that he is six feet tall. Again, I spoke about it and was told to wait. I have no excuse for this, none, but I waited some more.

I open Beauty and the Beast again. Belle is introduced as she reads a book while she walks along.

“What is Belle reading?” he asks.

“A book.”

Oren likes the page that introduces Gaston, the handsome jerk who wants to marry Belle. Oren likes to angle his arms like Gaston, who is showing off his biceps in a tight red jacket.

“Who’s this?” he asks.

“Gaston,” I say.

“Who’s he?”

“You tell me.”

“He’s Belle’s man,” he says, and strikes the pose again. “He has a red jacket.”

Why did I wait? It’s so easy to understand: I wanted it to work.

“What is Belle’s father’s name?” he asks.

“Maurice.”

He only likes me to read certain pages to him. On the other pages, he likes to ask these questions. It drives people crazy, this way he has of repeating himself, it even drives me crazy although I fully understand that this is his way of communicating.

“I’m thirsty,” he says.

“You can drink later.”

His expression is skeptical. I want to explain. I need to explain. “Remember when you fell off the couch and threw up and we had to go to the hospital?”

We were watching Cars after going to the zoo. He had been agitated all day. In the movie, the song, “Life is a Highway” was playing, when Mac starts driving McQueen to California, falls asleep and McQueen slips out and gets lost. Oren started making a weird noise, one I’d never heard from him before. Almost a whirring sound. His head started to shake. I moved him onto the floor before he fell but his head was still shaking and I kept one hand between the carpet and his head as I moved a pillow underneath his ear. It didn’t last long. At the hospital that night, I had a thought: Now I will have the courage to take him off the cannabis. Everyone agreed, it turned out, and the cannabis was stopped immediately, but his mood was still extremely agitated and would be for two months. He had many more seizures. But still I was grateful for the seizures because they brought an end to the cannabis. And when a few weeks later, the doctor, who finally began returning calls, suggested that we try another blend, I had the strength to refuse, but in a way I knew the doctor would accept: “Let’s give it a little more time.” I had learned long ago that doctors don’t like it when moms say no. The doctors have to be right, they have to be humored. But the key to dealing with them is to remember that they don’t care as much as I do. Delay is the preferred tactic. I wait them out.

At the mention of the seizure and the previous hospital visit, Oren says, “I don’t want to talk about it.”

He wants to talk about Beauty and the Beast.

“And Maurice goes — “ he says, and claps his hands over his ears, as the character does in the book.

I say, “And Maurice goes — ” and I clap my hands over my ears, too.

 

Oren had his first MRI when he had just been diagnosed with autism, at the age of three, to rule out a brain tumor. It was done in the basement of one of the buildings at the hospital where he was born. The two residents on duty looked like the heroes of a comedy show on the Disney Channel. They had never started an IV line on a child before and had to call someone to find out how. It’s put in the foot, if you ever need to know. The room was empty as they made their call to check, but then a moaning man, wrapped in a blanket, was brought in and put in the bed next to Oren. The man smelled foul, like someone who hadn’t showered in days. I looked at saw his hair and beard were filthy. They laid him down and gave him a shot but he threw off the blanket and began taking off his clothes. Oren didn’t seem to notice. The residents didn’t seem to notice. The blanket fell on my foot and I kicked it off.

Some of the details have blurred over the years but I remember they gave Oren a shot to calm him before they started sticking the needle in his foot, trying to find the vein, I guess. He didn’t struggle and they got it in, then went off to deal with something, the way they do at car dealerships when they pretend to be negotiating the price in a back office. It was just me and Oren and the naked man, although whatever Oren and the man had been given seemed to be kicking in because they both settled down. I had bought Oren a wonderful new book to give him in the waiting room, a book made out of cloth that you could touch, with different fabrics  and buttons and things that made noise when you squeezed them, but he didn’t much like it. Of course, I had other books as well, and dolls. He had been asking for water a few times in the waiting room and I shuddered anytime the water fountain in the corner hummed to life, fearing a tantrum. Now I held up the cloth book and touched the pages that made noises. Oren didn’t react. He had fallen asleep.

I stood next to Oren—and to the man—for what seemed like a very long time. This was before the smartphone era and I hadn’t brought a book for myself so I just stood and looked at the patch of the slate-grey Hudson River visible through the window. The river view is considered a great feature at this hospital but today the water and the skyscrapers on the New Jersey side didn’t look so great. A brick wall would have been just fine.

The two residents came back in and started wheeling Oren to the MRI. It pained me so much to think of him alone in there. If you’ve never had a child in the hospital, you won’t understand the intensity of the longing as you think: Why can’t it be me? The bad news is that no one ever offers that deal, although you would take it in a heartbeat. And just before that line of burgundy duct tape on the floor that meant I couldn’t go further, Oren woke up and started trying to pull the IV line out of his foot.

As I sat in the waiting room after they managed to fully sedate him again, I felt guilty when I drank from the water fountain. I was desperate for a coffee but afraid to leave even for a minute, and I wondered whether the worn book that the residents had consulted to check the anesthesia dosage for an average-size three-year-old was up-to-date and accurate. And, as you do when you’re in these waiting rooms, I questioned my whole life, everything that had brought us to this point. If you are waiting all alone, you realize that you have failed in some key way. How could there not be another person who cared enough about Oren’s MRI to be there?

As I thought about that, they let me know that it was over and I waited by his side while he slept. The naked man was gone.

It didn’t take as long as I thought it would for him to wake up. He began to thrash around first and then he opened his eyes. The residents were gone, but there was another doctor and an orderly. I called them and they came over. Oren started screaming. Had he been awake in the MRI, in spite of the sedation? Had the anesthesia brought on nightmares? I wished I could know, I wished so hard he could tell me.

 

That MRI 18 years ago was clean and the doctor who prescribed the cannabis oil told me that this one would most likely be fine as well. But it was so unusual for a person to develop epilepsy while on cannabis — the one thing it’s really known for is helping prevent epileptic seizures — that the doctor felt it was necessary, just as a precaution.

“Mom, I’m thirsty.”

“Let’s read.”

There is no way to know how long we will have to wait. I look around at the faded, worried old people and at Oren, so young and beautiful, slouching in his prized black T-shirt decorated with a map of the New York subway system, his favorite. He chooses his own clothes and usually wears this shirt home. It’s one of the ways he stays connected to New York, which we left behind not long after that first MRI.

We move through the princess book. Why does he love these stories so much? Well, I guess everyone loves Disney, but why the princesses? He has select pages that he loves to read again and again. In Cinderella, it’s the whole beginning of the book, the mean stepmother and stepsisters, and all the slapstick that most people don’t even remember with Cinderella’s mice tricking the nasty cat so they can get some food and Cinderella making the beautiful dress that her stepsisters tear to shreds.

But the page he really loves in Cinderella, the page he would  be happy to have me read 50 times in a row, says: “Cinderella’s friends watched sadly as she wept in the garden. ‘It’s no use,’ she sobbed. ‘Nothing will help.’ At that moment, bright sparkling lights began floating and swirling around Cinderella.”

Sometimes he just says, “Sadly as she wept in the garden,” out of the blue.

I think he wishes for a fairy godmother who would do what the one who appears on the next page does for Cinderella: Transform everything from ordinary into magically beautiful. A universe so wonderful there would never be any seizures, MRIs or miserable-looking old couples in a chilly waiting room. A universe where he could always drink water when he wanted to. A universe where he would meet his real-life princess.

On the next page, which he also likes, I read, “You can’t go to the ball dressed like that,’ the Fairy Godmother said. ‘But I’m not going,’ sobbed Cinderella. ‘Of course you are!’ said the Fairy Godmother.”

Once all the transforming is done, he looks at the pictures of ball: No subtext there. She and the prince fall in love. The part he skips is all the stuff about the slippers and we turn to the last page, the wedding and happily-ever-after.

 

The waiting-room looks emptier now. I haven’t been paying much attention but the older patients must have all been called in. My phone beeps now and then, texts from his father, why he isn’t here yet, when he’ll be here. The tricky part coming up will be when they bring us into the next room to start his IV. It will be harder to hold him down than it was 18 years ago and some burly male nurse will have to grab hold of his arms while another presses down on his shoulders. I won’t be much help. It isn’t that Oren wants to be uncooperative. It’s that he will panic when he realizes that the needle is going to go in his arm.

Now we’re on to Snow White, the main attraction of which for him is the Wicked Queen. He also likes to name the dwarves, like a baseball fan going over the starting lineup of his favorite team. I think he gets some of the names wrong, but I’m not sure.

As with all the stories, he has a favorite part. I’ve read it to him too many times this morning, so I ask him to read it. He has this whole book memorized and corrects me whenever I skip a word, anyway. He reads, “The dwarves chased the queen to the top of a rocky cliff. ‘I’ll fix you!’ she shrieked, as she tried to roll an enormous boulder down on top of them. Suddenly, a bowl of lightning struck the ledge where the Queen stood!”

It’s always “bowl of lightning,” not “bolt” when he reads it and I think about what awaits him the next room. Isn’t it an MRI more or less a bowl of lightning?

As the queen “tumbled off the mountaintop and into the darkness below,” I remember how at the time of his first MRI, I was convinced that the autism was something that I could fix by being a good-enough mother and that one of the therapies we tried would work. But here we are again, with the latest miracle cure — cannabis — turning out to be another god that has failed.

Just when I tell myself not to check the clock again, his father walks in and gives him a hug. Oren asks for water again — maybe his dad will give it to him — and his father explains why he can’t have it. Oren sits back, more relaxed than he is with me. His father goes off to talk to the doctors and nurses. The waited-for event, his father’s arrival, has come and gone. I’m still stuck trying to amuse him with the Disney Princess book in the waiting room and afraid to turn my back for a moment so that he doesn’t run to the water fountain.

In the treatment room, it’s his father who holds him down and the IV glides in smoothly. In a few minutes, he’s out of it. Now that he’s 22, they know how much to give him and he doesn’t wake up just as they are wheeling him in.

Right before he went in to the MRI, Oren made me read the page that he always likes to read last, the ending of Beauty and the Beast, after the Beast falls in love and turns into the handsome prince who wins Belle’s love: “And as Belle and her prince shared a wonderful dance, she knew that her dreams of romance and adventure had all come true.”

I’d settle for one dream. I’m not sure how many Oren wishes for.

Hannah Brown’s short fiction has appeared in Short Story Quarterly, the Jerusalem Post, Jewish Quarterly, and Commentary. Several of her stories have been included in the anthologies Israel Short Stories and Love in Israel, published by Ang.-Lit Press. Her novel, If I Could Tell You, received positive reviews from the New York Post and Jewish Week.

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