by Joan Cohen
The houses were modest split-level homes with lawns that looked raked clear of all leaves save the ones falling as Jeanne walked. The day was gray and chilly, the streets empty. Where backyard swing sets were visible, no children were playing, presumably all at school. A nanny, or perhaps a grandmother, came toward her with a sleeping toddler in a stroller. Jeanne moved onto the berm to let her pass. I could sooner envision myself walking on the moon than pushing a stroller down a suburban sidewalk. Her ringing cell displayed Maggie’s name. “Whatever this is supposed to do, Mag, it’s not working. I feel more stressed out than when I left the office.”
“How far have you walked, half a block?”
“I’m telling you, I never put my notebook into my desk. If I walk from here to Canada, that won’t change. Either I’m hallucinating, or I have Alzheimer’s, or both.”
“Or you’ve passed Canada, and you did indeed stick that notebook into your desk. It’s the drawer where you keep your purse. What could be more natural? Keep walking. What happened when you met with Luke? Did he make you think you were on the verge?”
Jeanne recounted the conversation on Lincoln Street. “He seemed to think having the genetic testing was pointless because of the rarity of the predictive genes and because I have no other family members with early-onset Alzheimer’s. Since my father’s not alive, there’s no way to test his DNA. Luke suggested maybe finding out my APOE status. It may be moot, though, if today is the first of many memory lapses.”
“If you called me for medical advice, here it is: walk around the block again, and when you get back to your office, put Alzheimer’s out of your mind. Oh yeah, tomorrow morning, leave your notebook at home.” By the time Jeanne completed her second circuit of the block, her high heels were squeezing her feet into their pointy toes. Maggie’s therapy had just replaced one kind of pain with another. Some nurse!
A series of marketing meetings left Jeanne with no time for worries about memory loss the rest of the day. Feeling more washed out than usual, she packed up her laptop at five and made her way slowly to the parking lot, where she was brought up short by her empty space.
Her heart rate ratcheted up as she turned the corner to the side lot, where the sight of her black car allowed her to release the breath she hadn’t known she was holding. I will remain calm, she told herself, as though become calm weren’t the more appropriate instruction. Yes, the lot had been crowded in the morning, and she’d turned the corner to park. At least, she was pretty sure she had. Maybe she’d been lost in thought and just forgot to note where she was leaving her car.
Maggie’s right. I’m just stressed. She listed the reasons for herself, imagining them on a pie chart: pregnancy, paternity, family secrets, Bricklin’s cancer, Jake’s PTSD, Parker’s mutiny, Vince’s anger. If she could assign each of them a percentage, a slice of the pie, she could own and manage them. But wait. Her heart lurched. She’d forgotten to put on the pie chart her own symptoms of Alzheimer’s.
Although Jeanne didn’t feel like talking to anyone but Bricklin that evening, she took Maggie’s call. “Could you come to Dawning Day tomorrow?” Maggie asked. Dawning Day was the last place in the world Jeanne felt like going, but Maggie had a Saturday shift again, so that was the only option.
“We won’t eat in the office or back in the Alzheimer’s wing. I’ll bring lunch for us, and we’ll sit in the dining room. It’ll be empty by one.” Jeanne agreed and prepared herself to be further admonished to reduce her stress level.
When Jeanne arrived at Dawning Day and asked for Maggie, the receptionist, who looked as heavily made up as a cosmetics salesperson, drew her penciled eyebrows together. “Are you sure she’s working today? I haven’t seen her come in.”
Jeanne hesitated. Since they’d set up their lunch date just last night, she couldn’t have the date confused . . . or could she? Yesterday had been a tricky day for her memory. “Yes, I’m sure,” Jeanne declared. “We have a lunch appointment.”
The receptionist adjusted her reading glasses, picked up the phone, and punched in an extension. From the audible half of the conversation, Jeanne gathered Maggie’s whereabouts were a mystery. She should have been in over an hour ago. “Why don’t you have a seat?” The receptionist gestured toward the lobby chairs. “Someone’s checking.”
Jeanne parked herself gingerly on an upholstered armchair next to a middle-aged man with skinny crossed legs the length of Ichabod Crane’s. “You have a parent here?” he asked her. She shook her head. “It’s a great place, but back there . . .” He pointed at the door to the Alzheimer’s wing. “My mother was upstairs, but they insisted on moving her. Alzheimer’s is a one-way downhill street.”
When Jeanne saw him tearing up, she turned her head away. Someday, maybe soon, she could be a resident of that land beyond the door. Would anyone be sitting here waiting to see her? No one she could think of would shed a tear over her diminishing memory and mental acuity. Someone at work would step up in a heartbeat to take her place. The hand that wasn’t gripping the arm of her chair covered her abdomen. Her child might be the one sitting out here, holding the hand of whom? A foster parent? No way. She withdrew her hand.
An aide poked her head out from behind the door of the locked wing and sang out, “She’s ready,” to the man beside Jeanne. He covered the distance between them in a few strides. No matter how bad off she is, Jeanne thought, he’s eager to see her. Jeanne had had friends, most recently Mimi from the gym, Sasha who’d worked for Jeanne’s last company, Amanda from . . . where had she met Amanda? No matter. One by one, they’d stopped calling. Or had she?
“What?” The receptionist’s phone was against her ear. She looked directly at Jeanne. “Yes, yes, I understand.” She wrote something on her notepad and replaced the phone in its cradle. “Young lady.” Jeanne jumped up. “I’m afraid Maggie’s been in an accident. They say she’s all right, but she’s been taken to Metro West Hospital.”
“If she’s okay, why is she at the hospital?” The receptionist shrugged.
Jeanne ran to her car. Maggie had been a friend, listening to her dilemma, offering advice, dedicating her precious time to helping, yet Jeanne hadn’t reciprocated. She wasn’t aware of a single problem that worried Maggie besides the digital scale’s readout at Weight Watchers.
Jeanne accelerated down Route 27 and rushed into the emergency room lobby. She talked her way past the triage nurse by claiming to be Maggie’s half sister and found her in the third examining room from the entrance.
Her owl-patterned smock was streaked with blood from what appeared to be a newly sutured cut on her forehead. Abrasions covered her arms, and a large hematoma swelled her shin. “Jeanne, what are you doing here? Oh, lunch. I’m so sorry.”
Jeanne covered Maggie’s hand with her own. “I came to make sure you were okay, not to check out the hospital cafeteria. What happened? Are you up to talking?”
A young nurse popped her head around the divider. “Maggie, you need to take it easy.”
“I can go.” Jeanne reached for her bag.
“No, stay.” She smiled weakly at the nurse, who withdrew.
“I’m impressed at their attentiveness,” Jeanne observed.
“Professional courtesy. They know I’m a nurse.” She tried to shift into a more upright position.
“Let me help.” Jeanne fumbled with the mechanism to raise the head of the bed, so Maggie coached her.
“I can see you haven’t spent any time in a medical setting. Lucky you.”
“Just wait till my Alzheimer’s advances and nurses have to change my diapers. Then we’ll see how dependable my luck is.”
Maggie laughed. “Spoken like a true risk assessment professional. Mine certainly wasn’t dependable today. I stopped at the dry cleaners on my way into work and when I got out of my car, noticed my vision was blurry. I must have stepped out too far into the street, because a car clipped me.”
“You were hit. Oh my God.”
“It was only a Mini Cooper.�
�� Maggie managed a weak smile. “Could have been worse. That’s a bus route.”
Jeanne had no chance to respond before a petite Japanese doctor appeared in the doorway to discuss the results of Maggie’s blood test. Jeanne was about to search out the waiting room, but Maggie urged her to leave the hospital and salvage her Saturday afternoon. “Not a chance. I’ll leave when you leave.”
On her way out of the emergency area, Jeanne asked a nurse where she could get a soda. After dawdling at the vending machine, she stopped at a restroom on her way back to give the doctor enough time to brief Maggie and arrange for her discharge.
The doctor was just leaving the examining room, and Jeanne was surprised to find Maggie blowing her nose, red-rimmed eyes visible above the tissue. “Do you want me to go back out to the waiting room?” Maggie shook her head, so Jeanne pulled a chair in close.
After two minutes of silence, Maggie began. “I’m diabetic.” Once again, her tears flowed. “That’s what happens to us fatties,” she spat out.
Jeanne leaned out of her chair and embraced her. “It’s not your fault.” Maggie’s tears wet the front of Jeanne’s blouse.
“You don’t understand. That’s the biggest risk factor for type 2 diabetes.” She banged her fist on her thigh. “I should have had more willpower. I knew the risk from my parents.” Jeanne jumped up to retrieve the tissue box from a metal table in the corner. “They were both very overweight. My mother gained so much weight when she was pregnant with me, she developed gestational diabetes. That put her at greater risk after I was born, and, sure enough, she got type 2 diabetes just like my father.”
Jeanne’s first reaction was a could-be-worse, but she stopped herself. No one wants to hear her feelings delegitimized because others in the world suffer greater misfortunes. She searched for the right words. “It’s a manageable condition, isn’t it? Once you get over the initial shock and settle into a routine with medication or whatever, it may not be so bad. Maybe it will even improve.”
“Thank you for saying that. I know you mean well, but, in my family . . . well, you don’t need to hear the gruesome details.”
Jeanne felt guilty, because Maggie was right. She didn’t want to hear those details, further proof of how messy life could be. She remembered the moment in Jake’s office when he had told her what he’d experienced in Afghanistan. She wanted to flee now as much as she had then. Jake hadn’t given her a choice, but Maggie would let her go. In fact, Maggie didn’t want to burden Jeanne. Had she always abandoned her friends without realizing it, she who met head-on any quantifiable problem? “I can handle gruesome.”
“Should I start with the amputations or the stroke?”
Jeanne shuddered, but she stayed put.
CHAPTER 9
By the time Jeanne arrived at Newford Wellman Hospital on Monday morning, her nerves were fried. Traffic down Route 30 was worse than usual, as though the commuting hordes were conspiring against her. She was coming down with a cold which forced her to keep one hand plumbing her purse for tissues. Blowing her nose was a delicate operation that normally required both hands. She held the wheel in place with her knee. “Move,” she growled at the SUV that first blocked the entrance to hospital parking and then crawled around each turn in the garage all the way to the top, where there were finally spaces.
She got out of the car and smoothed her jacket before adjusting her bag on her shoulder. After a deep breath, she started toward the elevator. Appearing calm was important. Weird that only a few months ago, losing her cool was the last thing she worried about.
Sharon Basko’s office was on the third floor. Jeanne’s directions took her past the gift shop, where fuzzy stuffed bunnies and kittens crowded the window, observing Jeanne with their glassy, noncommittal eyes. A few minutes later, she sat in the small, spare waiting area outside Sharon Basko’s office. An administrative assistant tapped her keyboard at a rate that matched Jeanne’s quickening pulse. A copy of Genetics on the coffee table caught her eye, and she flipped through it, scanning fruitlessly for the word “Alzheimer’s.”
The diminutive Ms. Basko appeared before her in a flowing tunic and trousers. Her silk scarf was wound loosely around her neck, and her dangling beaded earrings reminded Jeanne of a photo she’d seen of a sixties folk singer, although the genetics counselor was too young for the Woodstock generation.
Jeanne’s pregnancy was sending her on a journey away from her natural habitat. She was suddenly self-conscious about her corporate appearance. Ms. Basko, completely at ease, showed Jeanne into her tiny office. Her metal desk and bookcase took up most of the space, but there were two guest chairs opposite for prospective parents. Jeanne took the one closest to the wall, feeling as though the emptiness in the second chair was itself a presence.
Ms. Basko’s smile was warm as she urged Jeanne to call her “Sharon,” but she wasted no time in laying out the issues. “I see you’re forty-eight years of age, so I’ll come right to the point. The odds are your baby is normal, but I don’t want to deceive you. There are significant risks at your age. I usually go through them with the baby’s father at the same time, since he’ll need to be tested too.”
“Uh, last-minute emergency business trip. Sorry.”
Sharon asked questions about her ethnic background and Vince’s, since ethnicity figured into some inherited diseases. African Americans were at greater risk for sickle cell anemia, Caucasians for cystic fibrosis, and Jews for Tay-Sachs. Jeanne, unfortunately, had no information about her father’s biological parents.
Sharon also went through the statistical risk for Down syndrome and two other trisomy mutations. While amniocentesis would answer several important questions, she recommended Jeanne not wait, since a relatively new test was available to rule out Down syndrome. It was noninvasive and required only a blood test so the lab could analyze the small amount of the baby’s DNA in her bloodstream.
Jeanne fidgeted in her seat. Sharon offered her a glass of water. “I know this can be nerve-racking. We’ll try to get you the results as soon as we can, but the sample has to be sent out. You may not hear for two to three weeks.”
“I know I should be focused on these big risks, especially with such a geriatric pregnancy.” Sharon said nothing, waiting. “But I recently discovered my father exhibited serious early dementia before he died in his fifties.” Sharon’s eyebrow rose at the word “dementia.” “The news of his condition really staggered me.” Sharon nodded and murmured words of encouragement as Jeanne described her father’s symptoms and what she’d learned about early-onset Alzheimer’s from Luke.
“I understand completely. Of course you’re frightened by the implications for both you and your baby.” Jeanne hated being in this position of profound neediness. She’d never been the one requiring comfort and expressing fears. It was she who mentored and reassured others.
Jeanne straightened up as though better posture could help her shake off her discomfort. “I need to know with absolute certainty if I carry the PS1, PS2 or APP genetic mutations that will give me early-onset Alzheimer’s. I’m running out of time to end my pregnancy.”
“So, if you knew you had one of those genes, you could nail down ‘with certainty’ your own risk of developing Alzheimer’s? Your child would have a 50 percent probability of inheriting, assuming the baby’s father passed on a normal gene.”
“At least, my course of action would be clear.”
Sharon leaned back in her chair and looked up at the ceiling before answering. “It is a comfort to know the odds. After all, that’s what we’ve been discussing with regard to Down syndrome. Unfortunately, you’re not likely to have that clarity with Alzheimer’s.
“The chance that you have one of those genes is tiny. They’re rare. Your father more likely had two copies of APOE-e4, or else something entirely different may have been behind his condition, like vascular or Parkinsonian dementia. Even armed with your APOE status, you won’t know the future for sure. Most scientists think that APOE-e4 is a fa
ctor in 20 to 25 percent of the cases. Over 90 percent of Alzheimer’s is late onset, after sixty-five.”
“If the deterministic genes cause so few cases, and the predisposing ones don’t account for all the rest, then what does?”
“Probably interactions between genes and other risk factors like heart health. Remember, too, there may be genes and environmental influences involved that scientists haven’t uncovered yet.” Sharon’s information matched what Luke had told her.
Jeanne’s fingers curled into a fist. She was so frustrated that she wanted to punch a wall. She chafed at the knowledge that no matter how thorough she was in capturing the data she needed to support a risk-free choice, only the future could provide proof of her prescience or impose the consequences of her error. She gripped the arms of her chair. It just wasn’t fair. “Are you saying there’s no point in testing me?”
Sharon’s gaze was steady. “You’ll need to decide that for yourself, but we don’t do that kind of testing here.” She rose from her chair. “Now, let’s set you up for the Down test I mentioned earlier and rule out what we can.”
Jeanne emailed Luke after seeing Sharon Basko. He responded at the end of the day with the message that he would try to arrange an appointment for her to see a geneticist who could clarify what Sharon had said.
A week later, Jeanne was shaking hands with Dr. Cross, a towering redhead in an impossibly long white coat. Jeanne listened intently while he explained. “I don’t know how much detail you’ve been given, but there are hundreds of mutations in APP, PS-1 and PS-2, the three genes that are known to cause familial early-onset Alzheimer’s. We can do targeted gene sequencing now, but unless we find one of the known gene mutations, the results can be ambiguous. A person could have a mutation not known to be disease causing.”
Dr. Cross leaned across his desk. Even with the unlikely discovery of one of the rare predictive genes, the age of Alzheimer’s onset might be affected by the presence of other predisposing genes. Dr. Cross was uncertain of the lead time if Jeanne insisted on all possible tests. Careful interpretation of the results was required. It seemed to Jeanne that the more information she recorded in her notebook, the less she knew.