Chapter Fifteen Julian #3
“He has a severe form of epilepsy—over fifty seizures a day unmedicated. His mother was desperate and dropped everything to move to New Jersey to gain access to medicinal cannabis for him. I’ve been working with them for a few months.
It’s very hard to witness, and if you can’t refrain from judgment, you need to—”
The last bit of what she says is cut off as I launch out of the car.
“Julian! Wait!”
“It’s one thing when it’s an adult, Nomi, but a child with that serious a condition needs real medical treatment!”
“I completely agree!” Nomi catches up with me, grabs me by the arm, and pulls me back. “This child needs much, much more than I can give him. But please listen to what his mother has to say. They need our compassion and help. Not your outrage and not your judgment. Do you understand?”
I force myself to breathe deeply in, then out.
I understand a grown woman’s decision to get sleep however she can, and after seeing the damn-near miraculous effects on Mr. Gutierrez’s dyskinesia, I can accept that some treatments are worth the unknown future impacts to make the present worth living.
But there’s no reason a child with severe epilepsy should be treated by a person without a medical degree, even one as knowledgeable, intelligent, and caring as Nomi.
“I’m not trying to be an asshole, I promise. I’m just really, really concerned.”
“I am, too. The others, I wanted you to see because I wanted you to learn. For Charlie, though, I want your help. But you must remain calm.”
“Okay.” I blow out a breath. “I’ll do my best.”
She nods, and her fingers loosen around my arm. Part of me mourns the loss of the concrete, physical connection between us. Her hand holding me in place for once instead of pushing me away.
We walk up to the front door.
“Hello!” A small, harried woman answers after one knock.
“Come in. I’m Deborah, Charlie’s mom. You must be Dr. D’Angelo.
” She holds out her hand to shake, and I take it.
Her eyes are exhausted but bright with hope, something I haven’t seen since an early stint in the pediatric ER. It pinches my heart.
“Nice to meet you, Deborah.”
She leads us to the living room where a skinny, long-limbed boy with a flop of brown, unruly hair sits playing video games. If Nomi hadn’t told me, I wouldn’t have known he suffers from epilepsy. He glances up with a big, goofy smile. “Nomi!”
“Hey, my man!” Nomi hands Deborah a package of glass vials filled with liquid. “Deb, please fill Dr. D’Angelo in while I beat Charlie at Racing Raptors.”
“Aww, you wish!” Charlie says, then scoots over to make room for her.
I clear my throat, not realizing Nomi would be leaving me alone for this part. Her eyes find me, as if to say I’m choosing to trust you, and this feels like the real test.
Deborah and I sit at the scratched-up table. “So,” I wrack my brain for the best way to start. How long have you been dosing your child with marijuana? is not it. Thinking back to our visit with Mr. Gutierrez, I remember how open Nomi was—how gentle. How did she begin that conversation?
I smile softly. “Tell me about Charlie.”
Deborah, like most mothers I’ve met, lights up when she talks about her child. It’s just the two of them, his father cutting out when Charlie started experiencing seizures as a baby.
“Some relationships can’t pass the stress test,” Deborah explains wistfully. “That was me and Charlie’s dad. He still calls, sometimes.”
I want to punch Charlie’s dad. Hard.
She tells me about the long, difficult years in rural Kansas—trying to find care for Charlie, fighting for the state’s insurance for children living in poverty, then fighting it to cover the neurology care Charlie needed.
“When I finally found a neurologist that would accept our insurance, she was wonderful—fought so hard for us. Listened when others wouldn’t, and stood by us as Charlie’s seizures broke through each of the standard medications we tried.
” Deborah swallows. “It was her idea to try the Epidiolex, the purified prescription CBD oil for seizures? I didn’t approve at first. Charlie’s dad smoked pot and look how he turned out.
” Deborah releases a sad huff. “But the doctor told us how it was a godsend for her other patients with treatment-resistant epilepsy, and the seizures had gotten so bad, I was struggling to keep Charlie in school.”
She glances over to where Nomi and Charlie sit, laughing as their characters ride the backs of raptors across a racetrack, dodging falling comets and meteorites.
“He’s really smart, my Charlie. Most children with epilepsy as severe as his have significant developmental delays, and while he has his difficulties, he thrives in school, when he can go.
But his seizures were uncontrolled, and the school was scared.
I was, too. Legally they had to take him, but how could I send him knowing he was suffering all day long?
That’s when I agreed to try the Epidiolex, and it was like night and day.
Charlie’s seizures became milder, then with regular dosing, stopped for days, weeks at a time. It was a miracle.”
I blink. “Why’d you stop?”
“The free samples his neurologist gave us ran out, and Charlie’s form of epilepsy is not an approved condition for Epidiolex—he’d need to be diagnosed with Dravet or Lennox-Gastaut syndromes to qualify.
The state insurance refused to cover it, no matter how many appeals we filed, and I had to watch as Charlie’s seizures came back and worsened.
I couldn’t afford to pay out of pocket, though I bankrupted myself trying. ”
Deborah looks at her hands, and the shame coloring her cheeks twists my stomach.
“That’s when we moved to New Jersey and met Nomi, our angel. It’s hard finding a CBD oil that works the way Charlie needs it to, and while nothing’s as good as Epidiolex, Nomi’s gotten us pretty damn close.”
“That’s amazing,” I murmur, watching them laugh as Charlie beats Nomi, again.
I turn my gaze back to Deborah, trying to keep my voice steady and devoid of judgment, mentally rehearsing before I let the words leave my mouth.
“Have you found appropriate medical care for Charlie here? With his condition, a pediatric neurologist would be… a wonderful addition to his team.”
Deborah smiles as though I didn’t just utter the obvious.
“We’re on a waitlist for the only practice that accepts the state insurance for children in this area, though we’ll still have the same issues with getting Epidiolex covered for Charlie.
His condition simply isn’t eligible for it, even though it’s the only medication that works for his seizures.
Our immediate problem is with his school, though. ”
“How so?”
“Legally, they’re only allowed to give Charlie officially prescribed medications during the school day.
Over-the-counter CBD oil doesn’t count, and Charlie needs to take his second dose at lunch.
Without it, his seizures become uncontrollable again.
For a while, we got around it by me visiting him every day, but the school caught on.
” Deborah breathes deeply. “They love Charlie, but they have to follow the law.”
“And a doctor can’t legally prescribe medical marijuana…” My voice trails off as I fully understand Deborah’s terrible predicament. “They can only recommend it unless they can meet the stringent special prescription requirements due to its federal designation.”
“You see where we’re at. We can’t afford the legal medication that Charlie needs, and we’re not allowed to take the medication we can at school.
Charlie needs to be in school, Dr. D’Angelo.
He gets depressed without it, so isolated at home with just his nervous wreck of a mother.
But how can I let him go when his seizures are so dangerous? ”
My mouth opens, but nothing comes out. This woman is in an impossible situation, hampered at every end by man-made barriers that hurt her son and his future. Deborah’s eyes must register the utter loss I’m at, because the hope she had when I walked in has faded to a keen, piercing resignation.
Impulsively, I take her hands in mine. “Deborah, I don’t have an answer for you yet, but I’m going to. I promise.”
Deborah makes a small, choked sound that’s part relieved laughter, part despair too set in to ever fully leave. “Thank you, Doctor,” she whispers, then smiles.
Nomi looks up from her game, her eyes soft and grateful.
It’s a somber parting for the adults, but Charlie seems invigorated by the ass-kicking he delivered to Nomi and her purple raptor.
It’s hard not to notice the difficulty he has walking us to the door, the way his thin legs struggle with an even gait.
When he gives me a nod goodbye, the universally accepted man’s goodbye, I smile and give it right back.
I meant what I said—I’m going to help this family.
I just don’t know how yet.
Nomi and I ride in silence back to the dispensary, but not because I have nothing to say.
The truth is, I have too much I want to say, and none of it feels adequate enough to express how I feel.
I want to tell Nomi how… how impressed I am with how she treats people.
How much they trust her, like her, how much they appreciate what she does for their quality of life.
I want to apologize. I want to take back all the digs I made about cannabis.
More than anything, I wish I could take back how I accused her of manipulating people in need because nothing could be further from the truth.
She truly cares about these people. These clients were once strangers, and now are so much more.
How many patients have crossed my path with stories like Charlie’s that I never cared enough to hear?
How much suffering have I dismissed because it’s common, or worse, justifiable, by blaming people’s actions?
I want to confess how guilty I feel for trying to stop Nomi’s dispensary, for creating yet another obstacle to her clients’ struggle to have better lives. I want to say all this, and more.
When we reach the dispensary, the sun’s lazy rays paint Nomi’s long, brown hair with strands of fire and bronze, the pale freckles that dot her cheekbones pronounced in the day’s heat.
Nomi’s always been beautiful, but my chest could crack from seeing how beautiful she really is, just walking through this world, trying to help.