Still Alice

by Lisa Genova

Attention, rehearsal, elaboration, or emotional significance was needed if perceived information was to be pushed beyond the recent memory space into longer-term storage, else it would be quickly and naturally discarded with the passage of time.

Each of your children has a fifty percent chance of inheriting this mutation, which has a one hundred percent chance of causing the disease.

She wished she had cancer instead. She’d trade Alzheimer’s for cancer in a heartbeat. She felt ashamed for wishing this, and it was certainly a pointless bargaining, but she permitted the fantasy anyway. With cancer, she’d have something that she could fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if defeated in the end, she’d be able to look them knowingly in the eye and say good-bye before she left.

P.S. Do you know about the Dementia Advocacy and Support Network International? Go to their website: www.dasninternational.org. It’s a wonderful site for people like us in early stages and with early-onset to talk, vent, get support, and share information.

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.

You should also tell them about DASNI. It’s the Dementia Advocacy and Support Network International. It’s an online forum for people with dementia.

We feel like we are neither here nor there, like some crazy Dr. Seuss character in a bizarre land. It’s a very lonely and frustrating place to be.

My reality is completely different from what it was not long ago. And it is distorted. The neural pathways I use to try to understand what you are saying, what I am thinking, and what is happening around me are gummed up with amyloid.

“And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can’t offer it the names of the United States presidents in exchange for the names of my children. I can’t give it the names of the state capitals and keep the memories of my husband.

“I’d like to encourage earlier diagnosis, for physicians not to assume that people in their forties and fifties experiencing memory and cognition problems are depressed or stressed or menopausal. The earlier we are properly diagnosed, the earlier we can go on medication, with the hope of delaying progression and maintaining a footing on a plateau long enough to reap the benefits of a better treatment or cure soon. I still have hope for a cure, for me, for my friends with dementia, for my daughter who carries the same mutated gene.

“My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.

He gave them five: Be creative, be useful, be practical, be generous, and finish big.