by agebuzz Guest Blogger Mary Fridley
On June 18th, I moderated a conversation, Playing with Dementia: How the dementia experience can help us all embrace uncertainty, live more joyously, lead with our hearts and create a better world, with four incredibly creative and innovative dementia advocates: Phyllis Fehr, Daniella Greenwood, Lynn Casteel Harper, and Pia Kontos. As the title might suggest, we wanted to explore how discoveries being made by our four panelists – and thousands of others around the world who are living with, and impacted by, dementia – have the potential to transform our culture, which believes human beings “are our brains.” This attitude prevents everyone from living their lives to the fullest and stifles our collective ability to navigate an increasingly uncertain world with humanity, relationality, creativity, and justice.
As always, I was very touched by the impact the conversation had on those attending, one of whom wrote, “I have a grandmother who died of Alzheimer’s before I learned to walk and talk, and I have always been afraid that I am at higher risk. This panel has really helped dispel fear – I am more than my intellect! I am grateful to be part of this very inspiring conversation, so thank you for all you are doing.”
I was very touched by her expression of gratitude and it has inspired me to take a new look at gratitude and my relationship to it. Google defines gratitude as “the quality of being thankful; a readiness to show appreciation for and to return kindness.” Which makes it a bit hard to confess that I’ve never been comfortable with accepting gratitude from others (and if I’m being honest, in expressing mine to them). But now I’m starting to see my response as self-centered and kind of selfish.
My “guide” on this journey is my dearest (and decades-long) friend and colleague, Dr. Susan Massad. In addition to being a radically humanistic doctor who practiced medicine for over 50 years, during which time she worked hard to partner with her patients on creating their health together (yes, she has never been a run of the mill physician), Susan is also my partner in the creation of The Joy of Dementia (You Gotta Be Kidding!) for the East Side Institute in NYC.
Over the last decade, Susan has been diagnosed with three major cancers and as part of her “treatment,” she attends writing classes in NYC. I am sharing part of a piece she wrote about gratitude that had me in tears.
“When I was diagnosed with a third major cancer last year, I spoke with a group of friends and housemates who meet regularly to talk about and share health issues – anything from making major medical decisions to sharing aches and pains, to navigating dietary and exercise issues. I asked my housemates what they thought was my developmental task; that is, what kind of growing did this new occurrence in my life offer me. My friends of 30 to 40 years pondered the question briefly and gave me the following task: to let myself embrace, appreciate and find joy in letting people give to me; to let them carry my grocery bags up the three flights of stairs up to my apartment, take over my job of walking our dog at 11 pm and go with me on doctor’s visits and treatments.
I am learning to embrace and appreciate the giving-ness of others and at the age of 81, find it very gratifying to discover this practice of gratitude! I now see that a dominant value of our family growing up in the ’40s and ’50s was independence. Do-it-yourselfers we were, told we should go off on our own to explore the world and stand on our own two feet. This despite the fact that, as progressive political activists, this embrace of independence by my parents could be seen as contradicting their strong belief in placing the collective good above all. The reconciliation of this contradiction came in the form of rejecting the old values as my parents and their children asserted our independence to choose the roads we would travel on, while never losing sight that we were givers; giving to those who had less or were in need. Me and my sisters, each in our own fashion, took this practice to heart. I became an inner-city doctor, my younger sister a Buddhist accountant who volunteers in her community, and my oldest sister, now disabled, was a political science activist.
Now, back to gratitude. Where does this figure in? Giving: no problem. Letting myself be given to: a bit more difficult. After many years of asserting my independence and taking joy in giving to others, I was a bit stunted in the practice of gratitude: accepting the love and offers for help from others. So, I am grateful for all the small kindnesses that we give as we live our lives today and for the acceptance of each other as the imperfect human beings we are, especially those times when we ‘lose it!’”
I give you this in the hope it can help all of us to become better practitioners (performers) of gratitude. I invite you to join Susan and me in getting better at loosening the hold of “rugged individualism” (though I’m not sure too many people are feeling rugged these days) and living a more joyous and playful life!
Mary Fridley is the pro-bono Director of Special Projects at the East Side Institute in New York City and Coordinator of Reimagining Dementia: A Creative Coalition for Justice. She is an advocate for people with dementia and believes a dementia diagnosis can be the spark for rethinking what brings meaning and even joy in life. Mary is an accomplished teacher and workshop leader who has practiced social therapy for 12 years and uses the social therapeutic approach as an Institute faculty member. She was featured in a February 2019 Washington Post article, “Changing ‘the tragedy narrative’: Why a growing camp is promoting a more joyful approach to Alzheimer’s” and, with Dr. Susan Massad, Mary has co-authored several articles on the “Joy of Dementia,” including one for the Australian Journal of Dementia Care. Mary is also a playwright, theater director, and non-profit fundraising consultant.