In 2018, I was diagnosed with Alzheimer’s disease.
Yes, a diagnosis of this disease is technically a death sentence — and yes, it is a frightening prospect. But rather than take to my bed weeping, I chose to replace this negative with a positive. I vowed to be honest and real and to reposition the fear with hope.
My daughters were the ones who suggested I go get tested. After a long period of denial, I agreed. The day I received the diagnosis, I went home from the doctor’s office, went upstairs into my apartment, and stared at the wall for a very long time.
Then I took out pencil and paper and began to write what ultimately became the book Like Falling Through a Cloud: A Lyrical Memoir of Coping With Forgetfulness, Confusion, and a Dreaded Diagnosis, to help me process the large amount of emotions I was dealing with.
Now, after countless doctor visits, research, and work with Alzheimer’s-related associations, I have learned that the disease has three phases. Phase 1, which I am in, is thankfully the longest. It is important to understand that one can live an “almost normal” life in phase 1. The key is to continue living life to the fullest, as best you can and for as long as you can after being told you have Alzheimer’s. Life doesn’t stop the day you are diagnosed.
RELATED: Alzheimer’s Progression: Mild, Moderate, and Severe Stages
Playing Music May Be Helping Me Retain My Memory
Perhaps I have an advantage because I’m a musician. Doctors have said that there is an important connection between playing a musical instrument and memory. I’ve been playing the flute from the age of 10. I graduated from the Juilliard School and went on to an exciting career as a flute soloist.
But to truly reap the mental benefits of playing music, I do believe one must practice every day. And so every morning, I roll out of bed and practice, and that has allowed me to continue performing.
I also stay busy as the artistic director of Clarion Concerts in New York state. We present classical music concerts throughout the year, and my role is to select the guest artists and the music to be performed. Through staying active in my art, I am trying my best to seize every day.
RELATED: Living Well With Alzheimer’s Disease: Good Self-Care Makes a Difference
I Read My Poems, and the Group Discusses Them
I’ve also come to understand how important the Alzheimer’s Association is to people who have been diagnosed, as well as their caregivers. Thanks to them, I am now reading my book to Alzheimer’s Association chapters in New York City and across the state of New York, and I hope to read chapters in other states as well.
I read each poem, and the group discusses them — the key is the discussion that develops among participants, all of us with the same diagnosis. For example, when I read the poem below, titled “Taking Stock, or So You Know,” book club members started talking about how they had lost many of their friends because they were ashamed to tell them about their diagnosis.
Here is the poem:
I am a woman — 72 years old
I have two wonderful daughters, a husband I adore, lovely grandchildren
I’m lucky to have a vibrant career in the arts as a flutist, writer, artistic director of a major music series, television journalist, educator, internet entrepreneur, and despite a little glitch with my memory
THIS IS THE HAPPIEST TIME OF MY LIFE
I won’t joke about my Old Timers Disease, nor will I call it early you-know-what
I am determined to remain centered And in control and devoted to finding a way, my own way, to be able to say and to mean what I want to convey, and as long as I’m allowed to stay, I pledge to fight with all my might to keep darkness at bay.
The discussions after I read this poem resulted in some participants changing their minds about how they should approach this disease.
Rather than feeling shame, I often tell people I am meeting for the first time that I have Alzheimer’s, and we move on from there. And rather than lose friends because of embarrassment, I find that I am making new friends all the time!
Life Is ‘Almost Normal,’ but Not Entirely
I said earlier that my life was “almost normal” in phase 1 of Alzheimer’s, but of course I have to acknowledge that I have stopped driving my car, not because I lost my sense of direction, but because I lost my confidence. And, more important to me, I find that I no longer read as much as I used to.
And, yes, I have found the need to “power nap” more often. And, yes, I do get frustrated from time to time about this disease stealing my short-term memory!
There are definitely good days and bad, but I like to keep the focus as much on the good ones as I can.
My poems express my feelings better than any narrative.
The final poem in the book is this one, titled “A Super Sunny Sunday”:
and the tomatoes are bulging
on their vines
the flowers continue
to burst toward the sky
in colors that astound
while on the ground
a once hearty kale
has been ripped out by rabbits
who attack at dawn
and are 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 am determined
a way to make the rest of my stay
on this problematic planet
filled with light and love
I have a strategy to keep on keeping on
which is simple:
fetch the flute
summon up Syrinx
give thanks for another day