Taking a braincation

Dear David,

Last summer, when we returned from Singapore, we had lunch with Grandpa Beau at the Perkins in Naples. You were fidgety and loud. Beau stared at you a lot. I was thinking you were acting like me when I was six. I couldn’t sit still for very long then either, but usually you can.

I asked Beau who you were most like, fully expecting him to look at me and say “you, gal.”

“Me,” he said instead. (Meaning his own self.)

I want you to know that you are not him. Neither am I.

Beau once asked me to write a book with him about how to stave off “what his father had” (he made it a point not to use the word Alzheimer’s) by following his well-researched protocol. It took me a long time to answer, but I refused as politely as I could.   I wonder if I should have done it just to make him happy. I guess it doesn’t matter in the end.

Anyway, this is what I wanted to write: BRAIN IN A JAR, a book about a doctor so fixated on Alzheimer’s that it drove him to the brink of sanity; and, his gal who learned to swim in a sea of ambiguity.

People ask me if I will still visit Beau when he no longer recognizes me. The answer is yes! I will still recognize him as the father who made me think.  And I’ll still wonder how his mind works—something I never understood, even long before his diagnosis. I think Beau didn’t trust the human brain enough. Even in his addled state, he reaches out for my hand. He has a molecular need for love despite being incapable of expressing it now.

Let me tell you something, David. If I turn out like my father, it’s okay. Even if it seems like I can’t remember you, some part of my DNA will.

I might picture you swimming and laughing, in different languages, with Achmed in Malaysia and then remember my father conversing with someone who could barely speak. I might see you drawing a picture at Angkor Wat and remember the temple etchings my father brought me. If you give me a book, I may ask you to pay me to read it. Who knows how the synapses fire in Alzheimer’s patients? Maybe at the end stage, you exist one perfect moment all the time: seeing the Taj Mahal, swimming in the South Seas or staring into your child’s face.

One day, David, when you and I were riding the bus to your school in Singapore, I noticed that no one around was speaking English. There was Mandarin, Hindi and Arabic.  I didn’t understand a thing that was being said. I liked it. I realized then and there that you don’t have to understand everything going on around you. At that moment, on that public bus in Asia, I accepted my father for the person he was. I stopped trying to figure him out.

Life is measured in love—not brain mass.  

Institutionalize me when the time comes. Leave me lost in emotion, and go live your one wild and precious life. It’ll be like that bus in Singapore. I don’t need to know what’s happening to be happy. But I’ll know we are side by side on this and every journey.

If I’ve learned anything of late, it’s the heart that belongs in a jar.  

Love,

Mommy

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