“Mom, what are you doing?”
Her hand stung, she was too tired to endure the humiliating answer to Anna’s question, and an overpowering peanut smell coming from the bag disgusted her.
“Leave me alone!”
“Mom, it’s okay. Let’s go in the kitchen and have dinner.”
Anna put the mail down and reached for her mother’s hand, the hand that stung. Alice flung it away from her and screamed.
“Leave me alone! Get out of my house! I hate you! I don’t want you here!”
Her words hit Anna’s face harder than if she’d slapped her. Through the tears that streamed down it, Anna’s expression clenched into calm resolve.
“I brought dinner, I’m starving, and I’m staying. I’m going into the kitchen to eat, and then I’m going to bed.”
Alice stood in the hallway alone, fury and fight raging madly through her veins. She opened the door and began pulling at the rug. She yanked with all her strength and was knocked down. She got up and pulled and twisted and wrestled it until it was entirely outside. Then, she kicked and screamed wildly at it until it limped down the front steps and lay lifeless on the sidewalk.
Alice, answer the following questions:
1. What month is it?
2. Where do you live?
3. Where is your office?
4. When is Anna’s birthday?
5. How many children do you have?
If you have trouble answering any of these, go to the file named “Butterfly” on your computer and follow the instructions there immediately.
November
Cambridge
Harvard
September
Three
DECEMBER 2004
Dan’s thesis numbered 142 pages, not including references. Alice hadn’t read anything that long in a long time. She sat on the couch with Dan’s words in her lap, a red pen balanced on her right ear, and a pink highlighter in her right hand. She used the red pen for editing and the pink highlighter for keeping track of what she’d already read. She highlighted anything that struck her as important, so when she needed to backtrack, she could limit her rereading to the colored words.
She became hopelessly stalled on page twenty-six, which was saturated in pink. Her brain felt overwhelmed and begged her for rest. She imagined the pink words on the page transforming into sticky pink cotton candy in her head. The more she read, the more she needed to highlight to understand and remember what she was reading. The more she highlighted, the more her head became packed with pink, woolly sugar, clogging and muffling the circuits in her brain that were needed to understand and remember what she was reading. By page twenty-six, she understood nothing.
Beep, beep.
She tossed Dan’s thesis onto the coffee table and went to the computer in the study. She found one new email in her inbox, from Denise Daddario.
Dear Alice,
I’ve shared your idea for an early-stage dementia support group with the other early-onsetters here in our unit and with the folks at Brigham and Women’s Hospital. I’ve heard back from three people who are local and very interested in this idea. They’ve given me permission to give you their names and contact information (see attachment).
You might also want to contact the Mass Alzheimer’s Association. They may know of others who’d want to meet with you.
Keep me posted with how it goes, and let me know if I can provide you with any other information or advice. I’m sorry we couldn’t formally do more for you here.
Good luck!
Denise Daddario
She opened the attachment.
Mary Johnson, age fifty-seven, Frontotemporal lobe dementia
Cathy Roberts, age forty-eight, Early-onset Alzheimer’s disease
Dan Sullivan, age fifty-three, Early-onset Alzheimer’s disease
There they were, her new colleagues. She read their names over and over. Mary, Cathy, and Dan. Mary, Cathy, and Dan. She began to feel the kind of wondrous excitement mixed with barely suppressed dread she’d experienced in the weeks before her first days of kindergarten, college, and graduate school. What did they look like? Were they still working? How long had they been living with their diagnoses? Were their symptoms the same, milder, or worse? Were they anything like her? What if I’m much further along than they are?
Dear Mary, Cathy, and Dan,
My name is Alice Howland. I am fifty-one years old and was diagnosed with early-onset Alzheimer’s disease last year. I was a psychology professor at Harvard University for twenty-five years but essentially failed out of my position due to my symptoms this September.
Now I’m home and feeling really alone in this. I called Denise Daddario at MGH for information on an early-stage dementia support group. They only have one for caregivers, nothing for us. But she gave me your names.
I’d like to invite you all to my house for tea, coffee, and conversation this Sunday, December 5, at 2:00. Your caregivers are welcome to come and stay if you’d like. Attached are my address and directions.
I’m looking forward to meeting you,
Alice
Mary, Cathy, and Dan. Mary, Cathy, and Dan. Dan. Dan’s thesis. He’s waiting for my edits. She returned to the living room couch and opened Dan’s thesis to page twenty-six. The pink rushed into her head. Her head ached. She wondered if anyone had replied yet. She abandoned Dan’s thingy before she even finished the thought.
She clicked on her inbox. Nothing new.
Beep, beep.
She picked up the phone.
“Hello?”
Dial tone. She’d hoped it was Mary, Cathy, or Dan. Dan. Dan’s thesis.
Back on the couch, she looked poised and active with the highlighter in her hand, but her eyes weren’t focused on the letters on the page. Instead, she daydreamed.
Could Mary, Cathy, and Dan still read twenty-six pages and understand and remember all that they read? What if I’m the only one who thinks the hallway rug could be a hole? What if she was the only one declining? She could feel herself declining. She could feel herself slipping into that demented hole. Alone.