Renowned flutist Eugenia Zukerman has performed in concerts and recitals all over the world. She was the artistic director of Colorado’s Bravo! Vail Valley Music Festival for 13 years, and the arts correspondent for CBS Sunday Morning for over 25 years. And then in her early 70s, Eugenia was diagnosed with Alzheimer’s disease. Instead of crawling into a corner, she picked up paper and pencil and started writing – in poetry. She has no idea why she wrote in verse, but the words flowed and resulted in her vivid new memoir, “Like Falling Through a Cloud: A Lyrical Memoir of Coping with Forgetfulness, Confusion and a Dreaded Diagnosis.” Eugenia tells us how she stays positive despite her “gnarly” disease and about how she and her husband Dick are making every moment in life count, whether on tour with “Like Falling Through a Cloud” or among the bears and deers in their upstate New York house. Dick tells us about his experience of Eugenia’s diagnosis, and she reads from “Like Falling Through a Cloud.” Tune in for a tale of love and the incredible power of music.
JANA PANARITES (HOST) [spoken over music] – Eugenia Zukerman has been hailed as a triple threat: a published novelist, a television commentator, and most impressively, one of the finest flutists of our time. A graduate of the Juilliard School of Music, Eugenia’s performed in concerts and recitals all over the world. In fact, that’s her playing the flute in a 1997 recording of “O mio babbino caro” from the famous Puccini opera, “Gianni Schicchi.” Eugenia has written books, interviewed artists and directed concert series. For over 25 years, she was the arts correspondent on CBS Sunday morning. But a few years ago, in her early 70s, she became forgetful – misplacing papers and losing her words. The results of an MRI and a neuropsychological exam confirmed her worst fears. Eugenia’s cognitive impairment was real and would only get worse. She had Alzheimer’s disease. Unsettled but unwilling to go quietly into that gentle night, she began chronicling in her unraveling, mostly in verse. The result is a captivating memoir titled, “Like Falling Through a Cloud: A Lyrical Memoir of Coping With Forgetfulness, Confusion and a Dreaded Diagnosis.” Author Eugenia Zukerman joins us from her home in upstate New York. Eugenia, welcome to The Agewyz Podcast.
EUGENIA – Thank you. Glad to be here.
JANA – So early in your book, you wrote, “this is the happiest time of my life.” And yet at this point – you were in your early 70s – and from what I’ve read, your life up to this point was nothing short of spectacular. So for younger listeners, especially, I think we’d be really interested to hear what made your early 70s the happiest time of your life.
EUGENIA – I think the happiest time of my life was that I had been able to play my flute in many places around the world, and to make music with extraordinary players and to hear music. My life was not only wrapped around music, but also about writing, and also family. And my family was thriving, and my step-family was thriving. And it seemed that there was so much to do, and I was always eager to do it.
EUGENIA – And I became the Artistic Director of what is now Clarion Concerts of Columbia County. And so I’ve been able to make music up here with wonderful players. And upstate New York is one of the most beautiful places, not just in America, but in the world. It really is very beautiful. And the seasons are amazing. And we’re talking about a very happy time in my life.
JANA – I read somewhere online that at age 72, you were hyper-achieving and always busy, so you really didn’t think too much about the fact that you were starting to forget things. And then your daughters suggested that you get tested and you asked, For what?
EUGENIA – (laughs) Right.
JANA – Even though, as you wrote in the poem “Marbles,” you knew what for. You wrote, “this mother cannot be that mother” – which was stark and candid. How did you know? What were the signs you were observing in yourself? And how did you respond to their suggestion that you get tested?
EUGENIA – Well, yeah, I knew that I was confused. But I was managing somehow, to do everything I needed to do, and do it as well as I possibly could. I knew that I would sometimes have to reach for words that were somewhere that confused me. I’d remember things, but then I would forget. And I tried all sorts of ways to be able to retrieve words, etc. So I knew that something was going on. But I was indignant and quietly terrified about my diagnosis. But anyone who gets that diagnosis is in denial. Denial is the first thing that happens. Because it’s too overwhelming to imagine, Oh my god, here it goes.
EUGENIA – But once you make peace with the idea that it’s not going to be immediate, but that there is a process that is going to happen. And I decided that I wanted to live every day with as much force and energy, and particularly joy as possible. And the joy that I get is from my family. And I have one of the most extraordinary husbands of all times, and that makes a big difference.
EUGENIA – I also adore animals, and we have horses and dogs and we live in a very beautiful area. And it’s a very diverse area of people who are everything from truck drivers to amazing artists. And it is a – it’s a farm area. Right across the street is a huge farm, and it’s actually a cow farm. And so I can go walking among the cows, go hiking, I can take the dogs with me or not and it’s a wonderful area for being able to create things.
JANA – This book really takes readers on the journey. On your journey. And it’s very accessible, because we sort of float through the experience with you in this lyrical manner. But I wondered if you could reflect on the fact that your self-critical nature kind of got in the way of coming up with a strategy to adapt to this. One of the things that I thought was so interesting was that, in your first therapy visit, you were reluctant to go but then you felt, “oddly, unburdened and alert after that first visit.” I wondered if you could maybe reflect on that self-critical nature of yours, and your strategy of replacing unhealthy thoughts with positive thoughts?
EUGENIA – Well, I think from a young age, I was very critical of myself. I had a genius father, and my mother was the first woman admitted to City College School of Engineering. And my father had, I don’t know how many patents. And I always felt that whatever I did never quite met up with his expectations. And that was very difficult, because I was doing always very well in school, but there was always something that he made me feel I hadn’t done. And that’s a difficult thing for a kid to live up to, especially when I knew how brilliant my parents were.
EUGENIA – My older sister, Dr. Julie Ingelfinger, is a major doctor at Harvard, and an extraordinary mind, etc. And I have a younger sister who’s done many things. So I always was feeling like I am not up to par. And that was probably some kind of weird choice I had. Maybe it made me feel comfortable to know that I wouldn’t always be at the top of the heap.
JANA – That’s interesting.
EUGENIA – Yeah, but I really I was a happy kid. And I went to schools in West Hartford, Connecticut, and they were superb. The teachers were great, and the kids were great. So I feel that that kind of education was wonderful. Plus, I had started taking the flute when I was 10 years old, and I was so in love with it, and I am still so in love with it. And it’s helped me every day.
EUGENIA – And one of the things that’s fun here up in the country is that I can open the windows wide, and blow as loud as I want. Whereas in a New York apartment, you do have to be a little quiet. So it’s a beautiful place to make music, and to live and to be among such a wonderful variety of people.
JANA – So, now, you believe in this whole philosophy of replacing unhealthy thoughts with positive thoughts, so that your thoughts become more realistic. Do you believe your brain activity can actually change through this cognitive behavior therapy?
EUGENIA – I didn’t do so well with cognitive behavioral therapy. To be very frank, I felt there was something – for me – false in it. It just didn’t feel comfortable for me. I know there are many people who got a great deal from it. But for me… well, let me put it this way: everyone is different. And I did not respond to cognitive therapy in the way that many people do, with the feeling of, Oh my god, this is great. It wasn’t it a question of not trusting it. It just didn’t quite twig with me. And I did enjoy going. I did a very few sessions with psychologists who were very smart and very nice, etc. But I never found myself walking out and thinking, Oh, this is great.
EUGENIA – Part of the thing is that having this disease is confusing, and you never quite know what’s going to confuse you. So it’s difficult to say that I learned everything from cognitive therapists. It was a mix of things, and a mix of things that went from being able to play music to being able to write.
EUGENIA – And the writing for me was interesting, because after I went to my first session to be tested, I got back on the subway, got home, went up to my apartment, went into my room, and sat at my desk and stared at the wall for a period of time. I don’t know how long. I just stared at the wall. And then for some reason, I don’t know what it was, but I picked up paper and pencil and started writing. And I have no idea why I started writing in poetry. It just flowed that way. And I showed it to no one. I didn’t even tell my husband I was writing something.
EUGENIA – But my younger daughter, Natalia Zukerman, and I are very close. And I told her that I was writing something and I had no idea if it was any good. And by then I had maybe 25 pages. And she read it and she said, Mom, this is really quite amazing. You have to keep going. So I – that gave me the impulse to keep writing, and to keep doing it just for myself, because every day that I wrote something made me feel more in control. And that was important for me.
EUGENIA – One thing I did not want is to be looked after. And I go back to what I always say, in that the key to my life is staying positive. And I would suggest that to every single person who is not just having Alzheimer’s, but any difficulty. You know, just stay positive. Open the window. Look at the sun in the sky. And I really feel that way. When I’m up here just walking through the woods, it’s kind of amazing. Except when a bear is in the tree, which happened recently.
JANA – Oh, wow. Well, I think your capacity for having positive feelings is a reflection of your childhood, and the love – not to sugarcoat it, because I know that you in some ways had a difficult childhood. But really, that ability to maintain positive thoughts maybe comes a little bit easier to you than it might to someone else. And I don’t mean to suggest that you don’t have bouts of depression, because I’m sure that you do and I get that from the book. But let’s talk about the book.
EUGENIA – I actually – sorry to interrupt – but… I never feel depressed. I don’t know what real depression is. I think depression is something that starts and there are ways to stop it. I’m not sure how I’ve been able to stop it. But maybe the fact that I do a number of things that make me happy. And I think it’s so important, especially when you have a diagnosis as I have, [to] be as positive as I can be.
EUGENIA – And somehow, I’ve gone through writing this book with a great deal of joy, because it’s depressing to have that diagnosis and just sit there. What made it wonderful for me was to be able to write and I had no idea that I really wanted to do a book. But, you know, every human being has a death sentence. And I kept saying to myself, I could just step off a curb and get hit right now and it would end. And I don’t want that to happen. And so I felt that way all the time about – I am not going to let this make me unhappy. I’m going to work at staying sane, saying positive, and I would suggest that to everyone who has this really gnarly diagnosis.
JANA – Do you think that you’re more positive now than you were before the diagnosis?
EUGENIA – Yes, for some strange reason. You know, I know it’s – I know that I’m getting worse, worse in the sense of flubbing words, etc. But I think what I feel I still have is something cognitive that leads me. I don’t know if that makes any sense at all.
JANA – Yeah, yeah. It’s almost like a muscle memory that awakens.
EUGENIA – Yeah, I mean, yeah. I did seek help, but I feel that what saved me from crumbling and falling apart was music and love, poetry and oddly, laughter. I laugh a lot. And you know, I can read you stuff from my book that gives you the sense of who I am on that level.
JANA – Well, let’s do that. Let’s have you read a passage from the book.
EUGENIA – I think I’m going to, if you don’t mind, I will read two pieces. One is called, Like Falling Through a Cloud.”
EUGENIA – (reading) Like falling through a cloud. Sometimes when I wake up, it’s dark. Where am I? Sometimes I know, and sometimes I have no idea. So I let the night spirits wrap around me, and they whisper to me, don’t think, you will remember. I lie very still, and then suddenly, like falling through a cloud, I know I am here.
EUGENIA – This one is called, “Marbles.” (reading) Marbles. Maybe mine are lost, or maybe they’re rolling around in my head looking for a place to land. Or maybe not. My daughters tell me to get tested. Tested for what, I ask – even though I know for what. But it’s for what I don’t want to know. So I let the marbles roll around in a swirl of distracting colors, because I don’t want to listen to them, the daughters, because if I hear them, I will be very afraid. And this mother cannot be that mother. Not ever. Never.
JANA – Wow.
EUGENIA – It’s interesting to me that so many women say that that’s the most important poem in the book. I think it’s powerful because I think all women feel that way.
JANA – “This mother cannot be that mother.” What did you mean by that?
EUGENIA – And this mother cannot be that mother. That mother would be the mother who loses it – who gives up. I cannot – you know, that’s what I was trying to say. I could not give up. I could not be the mother who gives up I had to fight it.
JANA – Eugenia, if you wouldn’t mind, I would like you to read a poem that I’ve selected, and it’s called, “Back.” I lived in New York City for 16 years, and so I am very familiar with the congestion you can feel with people around you, and the confusion and the sensory overload. So I can only imagine how confusing and terrifying this must have been for you to have this experience, which is reflected in this poem called, “Back.”
EUGENIA – Exactly. I mean, I can still feel it.
EUGENIA – (reading) Back. I’ve returned to the city where everyone is busy and scurrying and worrying, and it’s late summer. Subways are crowded and hot. Folks are sweating a lot, and the trains are always late. And some man gets up to offer me his seat, which is sweet, if somehow insulting. Here’s my stop. I’m attempting to exit, I push my way out. Doors close behind. But when I look up at a sign, this stop is not mine. And worse, I’m totally turned around and can’t figure out, do I need to go back uptown? Or change to the downtown track? And how do I do that? Figure it out bird brain. I wander around the station, looking for an exit. Any exit. Just get me out of here. There – stairs. I stagger up, until I’m out above ground, out of breath, having arrived. Survived. The walk home will be good. I need to get my bearings. But I won’t be sharing the story of my panic, or pretty soon I’ll be forced to wear a lovely bracelet inscribed Memory Impaired.
EUGENIA – And guess what I wear? The bracelet.
JANA – Now.
EUGENIA – Yeah, I do.
JANA – Well, I don’t know – if you were my mom, I’d be glad to know that. Just in case. (laughter) Well, your reading of that was so animated. But for folks who have not seen Eugenia’s book yet, or read it, the physical layout of the book is really unusual. In some places it has a sort of familiar poetic style with short sentences one on top of the other. But in other places, sentences are set way off the margins, or the letters of a word are stacked vertically, or they’re strung across the page like a dangling bicycle chain. So you really get this sense of the confusion that, you, internally are feeling as someone who’s experiencing this anew – this terrible feeling of confusion. So, I am so happy that you read it that way. But it’s just as powerful when you read it on the page, as a reader.
EUGENIA – Thank you.
JANA – So I know that in 2016 – listeners might not know this – but in 2016, you were named Artistic Director of Classics on Hudson, a classical music series based at the Hudson Opera House. And in the book you wrote about introducing a concert at the Opera House called, “Protest.” I wondered if you could talk a bit about your approach to speaking in public to a full house at this time. This must have been quite something for you.
EUGENIA – It really was troubling to me because, you know, I didn’t really know that I would be able to get through a sentence. But my husband was the one who said, You don’t need to do this from memory. Nobody will care. Just, you know, have a piece of paper, nobody will mind. And that was difficult for me because as someone who had been on [CBS] Sunday Morning and being able to talk very easily, it worried me. But then I felt it just was important to get information, easily.
EUGENIA – I also want to tell a story about a man who came to one of my book signings. And I tell you this because I think it was quite stunning. He came up to me afterwards and bought six books, and he said he, too, had Alzheimer’s. And he couldn’t find the words to tell his family about what he was experiencing, and I had found those words. And he could then go back to his family and speak to them. And he said it was because of the book, “Like Falling Through a Cloud,” he felt closer to his family, and felt that they were beginning to understand what was happening. So that felt like I was helping someone else and I liked that a lot.
JANA – Mm-hmm. Well, you know, how we think about Alzheimer’s is often based on what we see or hear about in the media, and there is a lot of confusion about the disease. I wondered what misconceptions you would like to dispel about what it means to live with Alzheimer’s.
EUGENIA – I don’t know if I can dispel anything about what it means to live with Alzheimer’s. Everybody has a different experience, I do believe. Also, I can only say to families, be gentle. Be kind. Don’t be annoyed when a word doesn’t come out. And I think that it’s really important to talk about the Alzheimer’s Association. It is across the country, every town practically has an Alzheimer’s Association place to go to, and they provide help to patients and help to caregivers. And I am involved with them to help them bring this understanding to people, to know you don’t have to sit in your house and worry. You can pick up the phone and call the Alzheimer’s Association. They are available morning, noon and night. I find that so amazing. So we have a lot going in terms of finding the cure. And I fully believe that, and so many people constantly believe that we are getting closer and closer. But not yet. And I feel that the cure will be found and we can just do everything we can to make that happen.
JANA – Eugenia, I know that you’re still performing as a flute soloist and you continue to be a music director. I wondered what listening or playing music does for you now, versus maybe what it did for you earlier in your life.
EUGENIA – I can tell you, I just am delighted with music, more so and more so. I get up in the morning and I have coffee, and then I practice. And I practice just for fun. And then I practice for what I have to next perform. I think maybe because I have had a long and busy career playing the flute, I’m now at a phase where I just play for the joy of it. And it’s harder because my memory is not what it once was. And so I find myself playing more from the music, and I don’t like to do that. But I do it now, because that’s the way I make music now. That’s the way my brain is working.
JANA – Do you mean reading music?
EUGENIA – Yes.
JANA – Oh, OK. Thank you.
EUGENIA – In other words, playing from the page-
JANA -right, OK.
EUGENIA -instead of standing there without a music stand. You know, I played concerti on the stage with orchestras, etc., but now I need to use the music. And that was hard for me, because I felt like, Whoa, what does this mean? And then I decided what it means is you love it – just do it. And every day, I think almost every day, I play the flute. It just feels great. It feels like, you know, waking up and someone’s scratching the back and it makes you feel great.
JANA – (laughter) That’s a great description. I had a question for you, but it sounds like you sort of answered it. So I’m going to ask the second half of it. How do you think about the future now, if at all?
EUGENIA – I actually don’t think much about the future. Because when I think of the numbers, you know, I’m now 75, and that’s three quarters of a century. And I don’t think about it much. My mother died at the age of 103 and 10 months, just recently. And she was really pretty cognizant for the whole time. And one funny thing happened, just maybe a week or so before she died. I was with her at the nursing home that she was at, a wonderful place. And I kept saying, Mom, it’s me. It’s me. It’s Genie. Finally she opened her eyes and she said, I know – and you’re letting yourself go.
JANA – As only a mother can.
EUGENIA – And I can’t get over it, too. It’s the funniest thing of all time.
JANA – Well, I thought it was fascinating how you compared her “skiing downhill like a demon at age 73,” to your “forgetting words at age 73” and worrying about losing your mind.
EUGENIA – Right.
JANA – Wow. That really is a clarifying moment for you, there, huh?
EUGENIA – Absolutely. You got it.
JANA – Well, your husband’s so supportive – Dick. Has he expressed any fears? I think he’s still working. Is that right?
EUGENIA – He just retired. And it was the right time for him to retire. He worked for so many years in the broadcasting. I’ll let you ask him. Here he is.
DICK – Hello.
JANA – Hi, Dick. What I just asked Eugenia is whether you had expressed any fears, what your fears are around Eugenia’s disease, and how you’re handling this?
DICK – It’s an insidious disease. As you probably know it’s in three stages, and we’re in the early parts of stage one. Fortunately, stage one is the longest of the three stages. So hopefully, we’re going to continue with Eugenia being the way she is, for quite some time. The most wonderful thing has happened, and that’s this book, because we’re on a book tour now and things are going very, very well. And the book is still – we’re now in our third printing, and it’s a very exciting project and obviously a huge help to Eugenia.
DICK – Eugenia mentioned the Alzheimer’s Association. We found wonderful friends there, people who really know their stuff and offer help not just to patients but to caregivers. And the most important part of the work obviously is trying to find a cure, which as Eugenia says, they will do. So it’s an interesting adventure. It’s horrible to see memory fade, but Eugenia’s so courageous, and so unique in writing a book about her disease instead of going in a corner and crying. So it’s a very interesting time.
JANA – Mm-hmm. Are you getting some self-care yourself?
DICK – No, we’re both feeling very positive. I guess we’re kind of fatalist on before this diagnosis, we said that – Eugenia mentioned her mom died at 103 and mine at 99. But we said we don’t particularly want to live that long, for a whole bunch of reasons. What we were going to do is, rent deer costumes and go out in the fields in hunting season instead of getting too old. And in fact, it’s one of the poems, and it’s mentioned in the book.
JANA – I know. That was really great.
DICK – Yeah, and it’s – you know, we’re, I think, because of that attitude, that, you know, live every day becomes very important. And that’s what we’re both trying to do.
JANA – Uh huh. That’s great. Well, thank you for taking a moment to chat with me.
EUGENIA – Hi – I’m back.
JANA – Hi. So you’ve been answering the questions as we’ve been talking, without my prompting. That’s good for me. But I wondered if you could just sort of, for the record, say what you want people to take away from this book.
EUGENIA – What I want people to take away from this book is the idea that when something devastating happens, the best thing you can do is to take a deep breath, and try to work with it and make yourself feel better. And to understand that the most important thing is live every day. Every single day. And I think there are a lot of days that people who are suffering from a disease, etc., must open their eyes and say, Oh, this is another day. And I say don’t open your eyes saying that, open your eyes and saying, Look, what a beautiful new day, a new day I have a whole day. And I often think that.
EUGENIA – I want there to be something every minute of the day, and I do live my life that way. I wake up in the morning, I walk the dogs, I play my flute, I look out the window. I really keep myself busy just in the mundane things of – making the bed. I enjoy making the bed. I enjoy doing the wash. I enjoy everything in a way that I’m not sure I would if this hadn’t happened to me.
EUGENIA – Because I have so many friends who are my age who are, you know, they’re worried about what’s next and they’re depressed and they feel that they have missed the boat or something. But I would love to if you don’t mind, read the last page of my book, because I think it is what I want people to take away. It’s called, “A Super Sunny Sunday.”
EUGENIA – (reading) A super sunny Sunday. Almost August, and the tomatoes are bulging on their vines. The flowers continue to burst toward the sky in colors that astound, while on the ground our once-hardy kale has been ripped out by rabbits who attack at dawn, and they’re gone in a flash, leaving the crop tattered and torn. Nothing lasts forever. Not kale or tomatoes or cucumbers, or the glorious flowers that fill our fields, or the people we adore. And though I know my days are numbered, I feel unencumbered by thoughts of my demise. I do not embrace my inevitable decline. But I’m determined to find a way to make the rest of my stay on this problematic planet, filled with light and love and music. As for the deer suit I promise to don, I don’t think I’ll put it on. Not now. Not yet. I’m not ready. I feel steady. And I have a strategy to keep on keeping on, which is simple: wake up, fetch the flute, summon up Syrinx, give thanks for another day and then play on! play on! play on!
JANA – Well, that sounds like a great place to end. And for listeners, that is Eugenia on flute, with the Slovak Chamber Orchestra, playing the Flute Concerto in D Major by Johann Stamitz. We’ve been speaking with Eugenia Zukerman about her book, “Like Falling Through a Cloud: A Lyrical Memoir of Coping With Forgetfulness, Confusion and a Dreaded Diagnosis.” We’ll have a link on the Agewyz website to you Eugenia’s website so you can learn more about her and her wonderful book. And we’ll also link on our website to Eugenia’s Facebook page. Eugenia, thank you so much for being on the show, and for this enchanting book. I wish you continued, as you wrote in the book “romping with the hounds and enjoying the surrounds” with your man in upstate New York.
EUGENIA – Thank you so much.