Page 16
Story: The Golden Age of Magic #1
Health or hygiene? Was beautifully done hair hygienic? Was she calling me unhygienic? Kyle did sometimes refer to Grace’s hair as a vermin’s nest.
“Rules? What are those?”
I was being sarcastic, but she didn’t laugh.
It wasn’t until I became a mom that I realized how many people are not My People.
There was another mom a few weeks before this who I’d talked with about the popularity of unicorns, and she’d said, “Have you read that How to Catch a Unicorn book? I bought it because it’s a New York Times bestseller, but the language !
I had to return it.” When I inquired about the offensive language, she whispered, “ Fart. The book has the word fart ,” and I knew we could never, ever, ever be friends.
My phone rang, and for once I was grateful for that because it gave me an excuse to turn away from this obnoxious woman. My relief was temporary because I saw the call was from Merry.
“The doctor is here,” she said.
I checked to make sure the girls were happily playing—they were—and walked to a nearby bench. I knew I’d need to sit for this, no matter the news.
“So we’ve got all the results in,” the doctor began. I assumed it was Dr. Lee.
Merry interrupted: “Can you hear that, Nicole? I have you on speakerphone.”
“Is that Nikki?” I heard my dad ask.
“Yes, Mer, I can hear. Hi, Dad. Go ahead, Doctor. Sorry.”
“We didn’t see any inflammatory cells with the lumbar puncture.
No infection. No malignancy. All the biomarkers for autoimmune issues were negative.
The paraneoplastic syndrome panel is still pending, but we did a CT scan of his chest and didn’t see any tumors.
The blood work is negative for any other issues. ”
I wasn’t sure if this was good news or bad news. Her tone screamed bad news, but to me it just sounded like they were still uncertain.
Until . . .
“So we did a repeat MRI, and that showed significant changes from the last one that was done.”
She began to explain the changes in what sounded like a different language. I would have asked her to slow down, but it sounded like she was on her way to the important information, a train barreling down a rickety track.
“Considering those changes, along with the EEG showing irritability in the frontal area, and his unsteady gait and subacute cognitive decline, we think it’s a degenerative process called CJD.”
She paused, thinking we must have questions, but I had no idea what she was really saying.
“What do I have?” Dad blurted out.
“It’s one of the extremely rare neurodegenerative conditions I mentioned yesterday. It’s a prion disease.”
I’d heard of prion diseases before.
“Like mad cow disease?” I asked.
“Sort of, but this isn’t something from meat or anything. It just ... happens. Sometimes prion proteins in the brain misfold, similar to how healthy cells turn cancerous. We don’t know why.”
“And it’s definitely this?”
“The confirmatory test of the spinal fluid will take a couple weeks, but we are reasonably certain.”
She paused again.
“Can I drive?” Dad asked.
“I’m sorry, but you really shouldn’t be driving,” the doctor said.
“Wait, what is it called?” I asked.
“I need to be able to drive,” Dad said.
“Rob, hold on,” Merry told him. “We need to get all the information.”
“It’s CJD,” the doctor said, addressing my question. Then she said what CJD stood for, but again, it sounded like a foreign language.
I quickly googled CJD, and as I tapped on the first result, my entire world changed.
CJD.
Creutzfeldt-Jakob disease.
Human prion disease.
Rapidly progressive.
Invariably fatal.
Death within one year.
One case per million population.
Merry, who quite clearly hadn’t googled, said, “What are our treatment options?”
The doctor said, “I’m sorry, Mrs. Larson, but there’s no treatment.”
“No treatment?” She sounded personally offended. “What do you mean no treatment?”
“I’m sorry, Mrs. Larson. There are no known treatments for this.”
“What about golf? Can I play golf?” Dad asked.
Nobody answered him. It was silent. I checked my phone to make sure the call hadn’t dropped. It hadn’t.
I remembered with a start that I had children and they were here at the playground.
I looked up, half expecting them to be gone, kidnapped.
Already I had come to see tragedy everywhere.
But there they were, Grace playing with the perfectly coiffed girls and Liv sitting by herself, playing with something she had likely found on the ground.
I figured if it was anything dangerous, the annoying mom would come fetch me.
“Can he come home, then?” Merry finally asked.
“Yes,” the doctor said. “I have some recommendations for hospice care and—”
“We don’t need that right now, thank you,” Merry said. I could picture her waving off Dr. Lee, her hands swatting at the air.
My dad didn’t say anything. I wondered if the word hospice had registered with him at all. Perhaps it had for a split second, and then it was gone. Perhaps that was a blessing.
“Nicole, I have to go,” Merry said abruptly.
“Mer, wait. We should talk—”
She hung up. I texted her immediately.
Call me.
She responded:
I need to get him out of this place. Will call when we are home.
I had a hard time picturing Merry as capable of handling the logistics of signing him out of the hospital and getting him to the car. My dad was the one who handled all that life stuff.
Are you ok?
Such a stupid question, in retrospect.
Of course I’m not Ok . They’ve given up on him.
I started typing a response that included an explanation of why they weren’t “giving up.” I started to tell her that this was a terrible disease. Then I deleted all that and just wrote:
I love you. Call me later
I heard the shipwreck mom call to her girls that it was time to leave, and of course they came right to her like well-trained poodles.
She gave me a wave-from-a-distance, and then they piled into their Range Rover.
I walked back to the playground. Grace was pouting because her “friends” had left.
Liv was still playing with something on the ground.
“Look what me found, Mommy,” she said, her eyes full of wonder.
It was some kind of purple plastic object. She put it in her mouth.
“Okay, Liv, let’s not put weird things from the ground in our mouths.”
I went to take it from her, and that’s when I realized it was a tampon applicator. I instinctively threw it into the bushes with a yelp.
“What, Mommy? What happened?” Grace asked, intrigued by my horror.
“Nothing. Let’s go. We have to go home.”
I resolved to make Liv rinse with mouthwash and then scrub her hands until they were red. Then I would chastise myself for not being a better mother. Could Liv get a disease from a tampon applicator? How would I explain her having oral herpes to Kyle?
“I want toy,” Liv cried.
“What did you throw in the bushes?” Grace asked, starting to wander over there to investigate.
“Girls. Seriously. Mommy’s going to lose it.”
Grace climbed into the bushes, and Liv increased the volume of her crying.
I felt my body getting hot, boiling from the inside.
That’s when it happened. I closed my eyes and opened my mouth, and out came the most primal scream of my life, matched in intensity only by the sounds I’d emitted during labor.
It was long, requiring every last bit of oxygen in my lungs.
I was sure the shipwreck mom, now a block or two away, could hear me.
When I stopped, my heart still pounding in my chest, I fell to my knees on the ground and opened my eyes, and the girls were staring at me, dumbstruck and afraid.
Grace blinked hard. “Mommy?”
“We need to go home,” I said, finger combing strands of now-damp hair behind my ears.
Neither of them protested. Apparently, the quickest way to get children to behave is to become mentally unhinged and scare the shit out of them.
They were silent in their double stroller for the entirety of the walk home. I wondered if they’d fallen asleep, but when I checked, they were both wide awake, bug eyed, looking at me as if I were a complete stranger.
“I’m sorry I yelled,” I said.
They both just nodded. It was possible I’d broken them and they would forever cower in my presence.
I made a vow to myself to hold it together over the next few days. I would have to do that impossible thing that every mother must do—forget myself completely, tend to them as if I had none of my own concerns.
When we got home, Kyle was in the kitchen getting himself a snack.
If he were wired like me, or like any mother, he would have simultaneously made the girls lunch.
Women are masters of efficiency, always considering how many birds they can kill with one measly stone.
Men are accustomed to having all the stones in the world and none of the birds.
The girls played quietly with their baby dolls, and I could tell Kyle was temporarily impressed with my control over them. If he’d known what had inspired their good behavior, if he’d heard my outburst, he would have been horrified: Do you think the neighbors heard you? Did anyone see you?
“We heard from the doctor,” I said, standing close to him at the island, speaking softly.
The girls don’t see their grandparents enough to be very close to them, but I wasn’t prepared to talk to them about death as a concept. Grace, in particular, would have three thousand questions, and I worried I might die in the process of attempting to answer them.
He continued spreading peanut butter on a slice of bread and said, “Uh-huh?”
“My dad is dying.”
I really wanted to say “I was right” or “I knew it,” but I managed to be mature for once.
He paused his peanut butter spreading and set the knife down.
“Are you serious?” he said.
“It would be pretty messed up if I wasn’t.”
I told him the name of the disease. He said, “Man, that sucks,” which sounds like something a surfer would say in response to less-than-great waves, but that’s just the extent of Kyle’s language for unhappy events.
At least he didn’t say “Bummer.” He looked appropriately upset.
I have never seen Kyle cry, so I didn’t expect tears.
He’s always had a civil relationship with my dad, but they aren’t, like, pals .
They don’t play fantasy football together or talk politics or whatever else fathers and their sons-in-law are supposed to do.
Kyle isn’t even close to his own dad, so there’s no way he can fully understand my devastation.
“I’ll go up there again on Friday,” I told him.
He resumed making his sandwich. “Yeah, okay. God, I’m sorry, babe.”
“Do you want me to call a sitter to help with the girls?”
“Don’t worry about the girls. Or me. Okay?”
“Are you sure?”
“We’ll be fine.”
“Okay. I’ll leave the sitter’s number,” I said. “Just in case.”
He put an arm around my shoulders, pulled me into his side.
It felt stiff and awkward. We just aren’t that type of couple, which begs the question of what type of couple we are.
Our relationship was founded on physical attraction, buoyed by the hormones of youth, as most college relationships are.
We became more attached as we went through all the steps of young adulthood together, side by side.
Marriage was one of those steps. There was no reason not to get married, as far as we knew.
I can’t even say that getting married was a mistake.
We have made a good life for ourselves, for our family.
We do not share tender embraces and offer each other shoulders to cry on, but we have a nice house and two beautiful kids and a loose plan for retirement.
The fact that Kyle has the emotional depth of a rain puddle didn’t bother me until after I had kids, when I needed tender embraces and a shoulder to cry on more than ever before.
“I’ve gotta get back to work, but we can talk more later,” he said.
He gave my shoulder a squeeze, another unusual gesture for us, then took his sandwich to his office and shut the door.
Once he was gone, I started crying right there in the kitchen, while the girls continued their miracle of playing quietly.
Had I ever cried in their presence? These tears did not care who was there, who needed me.
These tears were resolute. I wasn’t sure if they were about my dad or my marriage or both.
Perhaps they were about everything I should have cried about for years, but didn’t.
Whatever the case, the dam had broken. I was grieving and it was awful, and it would probably be that way for a long time to come.
Table of Contents
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- Page 16 (Reading here)
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