With Alzheimer's disease, there is this view that we are or will be a burden. There is a belief that my journey, my life, and my decline will become a burden to everyone around me and there is a narrative that rather than being that burden at some point in this disease, I should end my own life. This "tragedy narrative" dominates Alzheimer's disease. I believe... there is an ultimate gift of love in that burden and the ultimate act of love is caring for someone through to the end of their life. Click here to listen to a beautiful version of my poem "Us", in song. I have been thinking about the reasons that I, in the face of a possible terrible future, find the energy and point of view of trying to imagine a journey of meaning and impact facing my diagnosis. I want to attribute at least part of that to my friend, Rabbi Laszlo Berkowits, and what he with his life has taught me – never give up. I am often told I am so brave for performing my play Dementia Man, An Existential Journey! Rabbi Berkowits was an example of what it truly means to be brave and has inspired me to continue to live my best life everyday. Continue with me on my journey and hear some of the recent challenges I experienced preparing Seder dinner with having a neurocognitive disorder. Click here to watch. This National Poetry Month, take a listen to three original poems written by Samuel A. Simon, in response to his diagnosis of Early-Stage Alzheimer’s Disease. For the month of April, I will be sending a signed copy of each of these poems to anyone who donates any amount to Dementia Man on my Fractured Atlas page! Click here to donate today. 1. "Going Away" (the moment of receiving my diagnosis) 2. "Sam's Psalm" (reflects my transition in this disease) 3. "Us" (written for my wife Susan during her journey with breast cancer) Take a listen to my reflections on the passing of a Hal Malchow, an influential campaign consultant who had Alzheimer's Disease and traveled to Switzerland for a physician-assisted euthanasia, plus about today’s solar eclipse. It may be April 1st, but this is not a joke! I can actually be in two places at once. Listen to this week's quick video blog on my Dementia Man YouTube Channel here. What does it feel like to have a cognitive disorder? How can we best share this experience through art? How does it feel different from everyday forgetfulness? I invite you to learn more about my experience with Early-Stage Alzheimer's on my Dementia Man YouTube channel here. Join me as I reflect backstage after my performance of Dementia Man, An Existential Journey in Washington D.C. with Sibley Senior Association. As always with every performance and Q&A following, I learned something new and left with an “aha” moment I’d like to share with you. Come to see a live performance of Dementia Man in 2024! Click here for tour dates. Also, please consider going to a local theater, religious center, or hospital and encouraging them to book Dementia Man, An Existential Journey! Valentine's Day has become my time to reflect on what "Love Really Means." For better or worse, I have had the privilege to be on "both sides now" -- being the care partner for Susan, my wife now of 57 and 1/2 years, as she went through advanced breast cancer. She is an unlikely survivor. And now it is my turn. I have Alzheimer's Disease, and so far, there is no cure. Susan is now my care partner. As I worked to give Susan the care and love she needed back then, I realized what love truly meant. It was more than a "feeling." It was the creation of a single soul -- we each become one-half of the other. On my newest video blog, I share my poem "Us" to remember how important love is and the power of the two most important words ever spoken: "I love you." Us Life exists within each of us as a form of the Divine. A tangible essence of who we are. Love is when our essence became entwined. Each an equal half of the other. "I love you" simply awakens the US in you and me. To listen to a beautiful version of this poem in song, click here. I have written about this moment before. Indeed, I wrote a book, The Actual Dance, Love's Ultimate Journey Through Breast Cancer. So, this Valentine's Day, I invite you to download a copy of the book from Amazon. You can buy it on Amazon here! |