Chapter Twenty-One #2
Cassie fought back a swell of nausea. “What are the odds I’m going to be lucky too, Shel?
What if you used up all our luck?” She knew this was ridiculous, that it didn’t work that way.
They both had the exact same chance of inheriting the mutation.
But she felt like she was either going to vomit or scream or run from the room. Maybe all three.
“Oh pumpkin, there’s enough luck for both of us.” Shelly drew her in for a hug. “At least you’ll know one way or the other, and you can plan.”
Plan for what, losing my mind? Cassie was about to say, but a trim woman in khakis and a blazer called her name.
“I’m Jeannette Torrington,” she said, shaking Cassie’s hand, then Shelly’s. “Let’s go on back.”
Jeannette Torrington was early forties with a warm smile and unruly hair that she didn’t bother to pull back.
She led them to a neat office and motioned to a comfortable seating arrangement.
“I hate talking to people behind my desk,” she said, taking an armchair across from them. “Makes me feel like I’m playing God.”
“Sort of feels like that anyway,” Cassie murmured.
“You mentioned your mother had early onset Alzheimer’s,” Jeanette said once they were settled and had declined waters. “Do you know which mutation? If you decide to go this route, we’ll need to know what to test for.”
“It was on PSEN1,” Shelly said. “Toward the end our dad had her evaluated so we’d know. They were just starting to do that then.”
“That makes it easier,” Jeannette said. “Sometimes folks come in and they don’t have a lot of information.” She looked frankly at Cassie. “As you may know, there are hundreds of early onset dementias, not all of them Alzheimer’s.”
“Could I have something else?” Was there such a thing as a better dementia? She felt another surge of nausea. She hadn’t eaten breakfast, but the coffee she’d had was threatening to come back up.
“Not likely. If your mother had a mutation on PSEN1, you and your sister both have a fifty percent chance of inheriting it.”
“I’ve been tested,” Shelly said quietly. “I don’t have it.”
Jeanette looked at Cassie. “So tell me.” She had a straightforward manner, and Cassie knew she would tell it like it was. “Why do you want to get tested?”
Cassie forced herself to unclench her hands, which she’d wedged between her knees.
Why did she want to get tested? Such a simple question but she didn’t have a good answer.
She’d made the appointment in a spasm of anxiety after she forgot about Mrs. Macuja’s visit, but there’d been other worries since then.
Misplaced words here and there. That awful incident with the windshield wipers when she hadn’t forgotten at all but thought she had.
The unrelenting, suffocating worry smothered her every hour of every day.
“I think on some level it would relieve a lot of stress,” she said, “to know why things are happening.”
“What kinds of things are happening?”
“What you might expect—reaching for words, forgetting people’s names. A while back I blanked on a big appointment.”
“Anything else?” Jeannette looked up from taking notes on an iPad. “Any personality changes? Sometimes we see that with early onset. Any form of Alzheimer’s.”
Cassie winced at how casually Jeannette tossed out the word. Alzheimer’s. The way your doctor might discuss your cholesterol, something to be managed. Only there was no pill to take for this. “Shel, have you noticed anything?”
Her sister considered. “Maybe a little cranky, but let’s see. You watched Dad almost die of a heart attack. You’re handling the sale of our childhood home. Your son has been suspended from school. And you just broke up with a guy you’re crazy about.”
Jeannette smiled. “Just a little stress there.”
“Could all this be stress?” The nausea had subsided, but now she’d broken out in a clammy sweat.
“Stress can manifest in a lot of ways—physically and mentally. But we won’t know anything definitively unless we test. Even if you do come up positive, you could still be suffering from stress, which always makes things worse.
” Jeannette looked at her squarely. “Just to be clear, if you do have the mutation, there’s a one hundred percent chance you’ll develop early-onset.
We can’t say exactly when, but unfortunately there’s no getting around it. ”
Shelly squeezed Cassie’s hand, but Cassie couldn’t look at her.
She couldn’t look anywhere except at a picture on the wall of a lush orange poppy unfolding to reveal a delicate black center.
For some reason the picture made her think of Glenn and the bees, and she felt a piercing sense of loss. “I’m aware of that,” she said quietly.
Jeanette gave her a moment, then went on.
“When I counsel patients, I always ask if they’re emotionally prepared for the results.
Positive or negative. That may sound surprising, but a negative result can be disconcerting too.
People sometimes end up with survivor guilt.
How old were you when your mother died?”
“Twenty-two. But she started showing symptoms when I was sixteen.”
“Were you both still at home?”
“I was in college,” Shelly said.
Jeanette gave Cassie a thoughtful look. “So you had to navigate what was happening to your mom all alone.”
Unexpectedly, Cassie’s eyes filled. She had a sudden vision of her mother on the way to a party in her dangly earrings and the yellow dress she’d loved. Blissfully unaware of what was coming. Would her mother have wanted to know? Would it have ruined the good years she still had left?
Jeanette handed her a tissue from a box on the desk. “It’s a hard thing to process when you’re that young. A time like now it all comes up again.” She waited while Cassie blew her nose. “You have children?”
“A son. He’s nineteen.”
“Have you spoken to him about this?”
“I need to.” Her heart felt like a stone in her chest. If she had the mutation, Andrew might have it too. He would have the same risk. Satisfying her own curiosity would curse him with the same wretched choice. And what would it change?
Absolutely nothing.
The poppy on the wall seemed to undulate, the orange folds rearranging themselves around the dark secretive center. She could stare at the picture for hours, contemplating its layers.
“So if you want to go ahead,” Jeanette was saying, “the test is simple. We just swab your cheek. It takes a couple of weeks to get the results, and we ask that you bring someone with you that day. It can be a lot to take in. If you want to make an appointment to come back for the procedure, they can help you at the desk on the way out.”
Cassie stood. “I’m not coming back.” She knew with a sudden, powerful certainty that she did not want this test. If she turned out positive, the moment she heard the news she would begin waiting for symptoms to start.
Every day would be a countdown to the inevitable end.
Yes, everyone’s life ended, but most people didn’t know how.
She wanted the joy of living a life of surprise, where the ending wasn’t ordained. It might still come to that, but she didn’t need to know. She wanted to live like she had a future. Yes, that meant heartache and not always being in control. But that was life in all its messy glory.
Getting ready to die was not the way she wanted to live.