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and wrestled it until it was enti...
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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
I’ve heard back from three people who are local and very inte...
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Keep me posted with how it goes,
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.
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?
“Cell phone, cell phone, cell phone,”
She checked everywhere but couldn’t find
“Alice, are you ready to go?” John appeared in the threshold of the living room looking expectant. She was relieved but needed more information. “Let’s go. We’re meeting Bob and Sarah for dinner, and we’re already a little late.”
The blue computer light glowing in the study caught her attention
She went in and checked her inbox, more out of habit than out of sincere curiosity. There they were. Dear Alice, My name is Mary Johnson. I’m 57 and was diagnosed with FTD five years ago.
Hi Alice, I’m Dan Sullivan, 53 years old, diagnosed with EOAD 3 years ago. It runs in my family.
Hi Alice, Thank you for your email and invitation. I was diagnosed with EOAD a year ago, like you. It was almost a relief. I thought I was going crazy.
There they were. And they were coming.
“Would anyone like something to think?” asked Alice.
“Alice, did you mean ‘drink’?”
“I’d actually like a cup of thinks. Mine’s been close to empty for days, I could use a refill,” said Dan.
They shared stories of their earliest symptoms, their struggles to get a correct diagnosis, their strategies for coping and living with dementia. They nodded and laughed and cried over stories of lost keys, lost thoughts, and lost life dreams. Alice felt unedited and truly heard. She felt normal.
“I have some news,” said John. “I’ve been offered the position of chairman of the Cancer Biology and Genetics Program at Sloan-Kettering.”
“But what about Mom?” asked Anna.
“But she needs to be here,” said Anna.
“No, she doesn’t. She’ll be with me.”
“This position is likely never to open up again in my lifetime, and they want me.” “I want her to be able to see the twins,” said Anna. “New York isn’t that far.
“I might be there,” said Lydia.
“I applied to NYU, Brandeis, Brown, and Yale. If I get into NYU and you and Mom are in New York, I could live with you and help out. And if you stay here, and I get into Brandeis or Brown, I can be around, too,” said Lydia.
Mom, wake up. How long has she been asleep?” “About eighteen hours now.” “Has she done this before?” “A couple of times.” “Dad, I’m worried.
“Ready?” asked John. “I’m a little scared.” “It’s now or never.”
he strapped her torso into a harness attached to a tangerine orange parasail.
“Ready?” asked John. “Yes.” He let go of her, and she soared with exhilarating speed into the palette of the sky.
“You’re so beautiful,” said Alice. “I’m so afraid of looking at you and not knowing who you are.”
“I think that even if you don’t know who I am someday, you’ll still know that I love you.”
“Wh...
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I don’t know that you’re m...
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and
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you lov...
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“Then, I’ll tell you that I do, and you’ll believe me.”...
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But will I always ...
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Does my love for her reside in my hea...
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The mother in her believed that the love she had for her daughter was safe from the mayhem in her mind, because it lived in her heart.
I just got cast in this great play. It’s a small part, but—” “It’s okay. I wish I could see you more, too, but I’d never let you stop living your life for me.”
“Your dad wants to move to New York. He got an offer at Sloan-Kettering.” “I know. I was there.” “I don’t want to go.” “I couldn’t imagine that you did.” “I can’t leave here. The twins will be here in April.” “I can’t wait to see those babies.” “Me, too.”
if I
get a little turned around, I eventually see something that looks familiar, and enough people in the stores know me and point me in the right direction.
I have my support group friends here. I need them. I couldn’t learn New York now. I’d lose what little independence I still have.
“Mom, you need to tell all this to Dad.”
“I DON’T WANT TO MOVE to New York,”
“It’s a long ways off, we don’t have to make a decision on it now,” said John.
“I want to make a decision on it now. I’m deciding now. I want to be clear about this while I still can be. I ...
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Would they be willing to let you take your sabbatical year and start a year from September?” “No, they need someone now.
