A way through the brambles

Nearly four years ago, internationally renowned flutist Eugenia Zukerman was diagnosed with Alzheimer’s disease. Almost as soon as she heard the verdict after a neuro-psychiatric exam, she sat down to write. What emerged was Like Falling Through a Cloud, a lyrical book of poetry that unfurls her journey through gradual cognitive impairment and memory loss.

“What seems to have saved me from crumbling and falling apart,” she has said, “was music, love, poetry and, oddly, laughter.”

Classical music fans know her, The Boston Globe exclaimed, “as one of the finest flutists of our times.” Enthusiasts of the CBS Sunday Morning show recognize her as the show’s sharp-minded arts correspondent, a role she held for more than 25 years. For the millions of people living with Alzheimer’s, her poems — heartbreaking and honest — may offer hope or solace.

Contributing editor Paul Costello spoke with Zukerman at the end of 2019 when her book of poetry was first published. He checked in with her recently, just as she received her second dose of the Moderna COVID-19 vaccine. Her husband, Dick Novick, joined her on the phone and helped when she struggled for a word. This Q&A was edited and condensed from those conversations.

Costello: Although the Delta variant is wreaking havoc in many parts of the United States, for many of us who’ve been vaccinated there’s a new normal. How are you doing?

Zukerman: I feel really good. I most look forward to seeing my grandchildren in Washington, D.C. It’s torment not to be able to see and hold them.

As far as Alzheimer’s, I am towards the end of the first part, but I feel I am very functional. I know what I want to do, and I am lucky that I’m able to do those things. I start my day by rolling out of bed and doing floor exercises. Of course, I do play my flute a lot. My flute is my best friend, my other. For me, it’s a very positive time in my life. I feel very blessed and I try to simply live every day.

Costello: You said you feel you’re at the end of part one?

Zukerman: I don’t feel that I am in stage two, when one needs more help, but I know it’s getting significantly closer for me. Stage three is hospitalization, and I feel I’m nowhere near that. I’m lucky. I do a lot of exercise. I have friends. I love to play with the animals. I am still performing — virtually — so for me, it has not been a terrible experience. In fact, I’ve learned a great deal through this disease.

Costello: What have you learned?

Zukerman: I think the important lesson is that you try your best. I want people to understand I am not suffering. It’s so important to stay positive. I would say one of the most important things is to be as energetic as you can. What’s been important is to also accept the fact that I’m not perfect. I am flawed.

Costello: Since you’ve written your book of poetry, what have you heard from readers?

Zukerman: Before the pandemic, I was doing [struggling for the words, she turns to her husband] signings, yes, signings at bookstores.

There was one very elegant man in line who bought six books. When he reached me, he said, “I can’t thank you enough, because my family has never understood what I’m going through as a person who has Alzheimer’s. What you told us here tonight made me understand, and I’ll be able to go back to my family and they will understand more what I am going through.”

That was a wonderful feeling.

“At the age of 10, I heard the flute in the local orchestra. I literally ran home and said, ‘I have to play the flute.’ I would go to school and come home and knew that my best friend was at home.”

Costello: Many people diagnosed with Alzheimer’s are filled with fear and anxiety. Were you?

Zukerman: I was with my younger daughter when I had the diagnosis; I was not afraid. I knew that I had the condition. For some reason, I didn’t cry. I think I just took it for what it was. I brought it home with me.

When I got up to the apartment and sat down at my desk, I stared at the wall for a while and, for some reason, put some paper down and started to write. That’s how the book came about.

Costello: What were you thinking as you stared at the wall?

Zukerman: I wasn’t really thinking about what I had just gone through. I was just thinking that this is a new set of circumstances. It’s sudden … but I am not afraid. I haven’t been afraid throughout this whole process.

Costello: One of your poems is entitled “Marbles.” Why marbles?

Zukerman: Marbles are beautiful. They make noise. They make music. I don’t know why the marbles metaphor came to me in such a strong way, but it seemed to me that what had been a very stable life was now pulling apart and rolling around like marbles.

Costello: The title of your book of poetry is so beautiful, Like Falling Through a Cloud. What meaning does that have for you?

Zukerman: My mother died at the age of 103. She often talked, even in the last days, of how she was floating. I had the idea of me floating and just lying up in the sky, and there’s a moment in which you must fall.

I think once you have fallen through a cloud, there is a certain moment of clarity. The clarity for me was the understanding that yes, I had a condition, and yes, it was a death sentence, but I wasn’t afraid. I think it’s a gift.

I don’t know where that comes from. Because I’m not a terribly brave person, I feel as if I’ve handled this pretty well. The book, I think, is rather joyful.

Costello: You wrote the book for yourself, as a way to channel your Alzheimer’s, but you also wrote the book for other people who struggle with cognitive difficulties.

Zukerman: I absolutely did. I had met people who were having tremendous problems; they were terrified. I felt that it was not good to be terrified. I wanted people to understand that not only can they find their way through this, but they can come out, in many ways, stronger.

Costello: Speaking as a classical musician, how is poetry similar to music?

“I’ve discovered that I am stronger than I thought. I’ve discovered I want to try, in the time I have left, to write more, keep performing, be with my loved ones. I want to live every day to the clearest of my abilities.”

Zukerman: It’s extremely similar. They are one and the same. I have always written poetry. Since I was a little girl, it just flowed. I thought it was magical the way you could put words on a page and make them feel really alive.

Costello: What is it about the flute that has so moved you?

Zukerman: It’s given me a best friend for life. At the age of 10, I heard the flute in the local orchestra. I literally ran home and said, “I have to play the flute.” I would go to school and come home and knew that my best friend was at home. I think that I have practiced every day of my life.

Costello: You still play professionally. As a self-described perfectionist, how do you accept those days when you’re not your best because of your illness?

Zukerman: I think you deal with it by knowing that every day you want your best to be there, and every day it can’t be there. Not for anyone. I am very clearly listening to myself now, and I know there will be a moment when I play only for myself, for my family or for my grandchildren.

I don’t think I have anything to prove or win anymore. I adore music every day. I listen to it every day. It is a great strength in my life.

Costello: When people meet you at book signings, what do they tell you about memory loss and cognitive difficulties?

Zukerman: Everyone is afraid. They’re afraid because they don’t know what comes next. This is where music helps me a lot.

A few years ago, I was giving a talk and decided to talk about memory loss. I just started talking and telling them what was going on with me. I looked up and every woman was weeping. Weeping. I thought, “Whoa, this is amazing.”

Afterwards, I spoke to people individually. Some were crying because they were afraid of getting it. Others were crying because it just didn’t seem right. It’s a very complicated disease. You know there’s going to be a definite end.

Costello: Since your diagnosis, what have you discovered about yourself?

Zukerman: That’s a tough one. I’ve discovered that I am stronger than I thought. I’ve discovered I want to try, in the time I have left, to write more, keep performing, be with my loved ones. I want to live every day to the clearest of my abilities.

If anyone were to ask me or say to me, “I’ve just been tested, and it seems that I have cognitive impairment. What should I do?” I would say, “Live your life and live it with joy. Live with as much vibrancy that you have.” I only know, for me, I felt it was really important to not give in to this disease, but to figure my way through the brambles.

This interview was condensed and edited by Paul Costello from his podcast interview from Eugenia Zukerman.