Before I Forget…Let Me Tell You that I Do Forget
For the past three years I’ve been living with a diagnosis of Alzheimer’s disease; and during this time, here is what I’ve learned about the disease and about myself: I was diagnosed with Alzheimer’s disease in 2018. But from the very first day I decided to stay positive.
Indeed, on that first day, I went back to my apartment, sat down and stared at the wall, and then for some reason I started writing a book called Like Falling Through a Cloud: A Lyrical Memoir of Coping with Forgetfulness, Confusion, and a Dreaded Diagnosis.
It is very important to remember that Alzheimer’s has three phases. The longest phase is the first. In phase one, you are able to perform most functions quite normally; and I have found the key is to continue living life to the fullest, as best you can, and for long as you can after being diagnosed. Unlike many fatal diseases there is no physical pain, so enjoying life, and being productive, doesn’t stop the day you are diagnosed.
I may have an advantage because I’ve been playing the flute from the age of ten and am enjoying a vibrant career as a flute soloist. The good news is that doctors are now saying there is a relationship between playing a musical instrument and memory retention.
I’m also currently the Artistic Director of Clarion Concerts in Columbia County, New York State. In that role, I invite top classical artists to perform in our concerts in superb venues in our area. I’m also doing book readings to organizations serving individuals living with Alzheimer’s disease, which lead to lively discussions with others who are living in phase one.
From these discussions, I’ve discovered how people are dealing with their diagnoses. Many of them have, unfortunately, lost their friends because they are embarrassed to talk about their diagnoses. Many avoid social encounters and situations. I try to show them the opposite side of the coin. For example, when I meet new people, I immediately tell them that I have Alzheimer’s. Lots of times I will say, “Before I forget, let me tell you that I do forget, because I have Alzheimer’s.”
Their reactions vary, but, most times, because the disease is so widespread, the response is that they have a parent or family member with the disease; and they immediately feel more comfortable.
I said above that in phase one of Alzheimer’s, one can perform most functions “quite normally.” So here is the downside for me. I have stopped driving my car. Not because I became lost while driving, but because I have lost my confidence about my ability to drive. When I told my husband about my concerns about telling the difference between the gas and the brake pedal, we knew instantly it was time to stop. And I no longer have the ability to read the newspaper every day, and reading a book is getting harder and harder. And, yes, truth be told, I am repeating the same questions more frequently, as my short-term memory begins to fade.
But my resolve to stay positive remains strong! One has a major decision to make once diagnosed: You can either crawl into bed and cry or make the very most out of the rest of your life by staying positive and seizing every day. The last lines of the final poem in my book, Like Falling Through a Cloud, say it all:
Eugenia Zukerman is a musician, writer, and journalist who covered the arts for CBS Sunday Morning for more than 25
years. An internationally acclaimed flutist, she has performed with major orchestras and music festivals around the world. She is also the author of Like Falling Through a Cloud: A Lyrical Memoir of Coping with Forgetfulness, Confusion, and a Dreaded Diagnosis.