If you have the desire to feel many emotions at once, write a book about your family and Alzheimer’s disease. Call it Brain in a Jar. On one hand, you’ll feel elated. On the other hand, you’ll feel deflated. People will say amazing things to you. People will say horrible things to you. You will be flabbergasted and flummoxed. It’s fun and horrible! You’ll love and hate it.
Case in point:
At the conference in Iowa I attended last weekend, the director of the program was speaking to me and another attendee. When he said the word “Alzheimer’s,” he pointed to me. He was speaking about AD in general, not me specifically.
I said, jokingly, “Could you please not gesture to me when you say Alzheimer’s disease, I am not that word.”
The other man standing with us spit his coffee out. I laughed. But I was kind of serious. I don’t want to be the poster child for AD. Yet, in some ways, I do.
Confused? Welcome to The Mixed Up Club.
Also at the conference, after I was done reading a section from my book, a genetic counselor/ethicist screamed out, “YOUR FATHER WAS WRONG!” She was referring to the fact that my father gave me the genetic test for Alzheimer’s disease when I was 34.
Excuse me? An ethicist is yelling at me about my dead father? Hello? Talk about ethically wrong! I told her, calmly, that my father did what he thought was right, and that I understood him and his ways. She apologized to me after my talk.
Meanwhile, lots of doctors, nurses, counselors and writers were fascinated by my story. We had a robust conversation about enduring and ending life. Some were crying. Some were laughing. All were saying, “thank you for the courage to speak and write about these things.”
After my talk, I went and got a manicure in downtown Iowa City. My manicurist was Vietnamese. We were looking at a fashion magazine together and every time she saw an African-American depicted, she said, “Well, she’s pretty for being black.”
Friends, there were black people who could hear her in the salon.
Perplexing. All of it. I guess that’s life, death, ethics, ethnicity and Alzheimer’s disease.