For reasons hard to explain and even harder to comprehend, I have been more joyful in the past year and a half than ever before in my life.
Wanting to understand how I could experience so much joy while living with the dreaded diagnosis of dementia, I posed my question to Archbishop Desmond Tutu and His Holiness, the Dalai Lama, by reading The Book of Joy, the account of a weeklong conversation between these two great spiritual masters. Both now in their 80s, they have witnessed and experienced more than their fair share of trials and tribulations. And yet, Archbishop Tutu and the Dalai Lama are two of the most joyful human beings on the earth.
They define joy as an approach to life and a way of being in the world that radiates even in the midst of hardship, pain and suffering. The spiritual leaders concluded that suffering is both an unavoidable aspect of life and a required ingredient in the recipe for joy.
Archbishop Tutu and the Dalai Lama also agreed that joy is a by-product of our own actions and attitudes, regardless of our circumstances. Over the course of their weeklong conversation, they concluded there are eight pillars of joy: perspective, humility, humor, acceptance, forgiveness, gratitude, compassion and generosity. I’m now using these lessons in daily life.
My decision to reframe my dementia from an intrusion to an invitation, from a death sentence to pilgrimage, has helped me discover and cultivate joy in this new chapter of my life. I’m also coming to believe that joy is a key factor in helping me to manage and slow the progress of my condition.
As I enter this brave new world of dementia, I am deeply humbled by the courage, dignity, determination and joy of those who are living both independently and in memory units. I am honored to call them sisters and brothers, even when their dementia causes them to behave in ways that make me uncomfortable.
As my spouse Emily and I remind each other on a daily basis — when the wrong word comes out of my mouth, when I say or do something inappropriate in public, when I get flustered, when I can’t find my phone, my glasses or my hearing aids for the upteenth time, when I change my clothes several times in the morning, when I can’t get out of a chair or stumble over my feet, and when we have to go to one more doctor’s appointment — if we don’t laugh on this journey with dementia, we will cry. And there are days when we do both at the same time.
When I deny the reality of my dementia, grieve the lost aspects of my old identity, and resist the emerging aspects of the new me, I get tied up in knots; but when I accept what has died, let go of what has been lost, and celebrate what is being reborn, I start discovering surprising gifts and strengths, a different kind of balance and a new and more joyful way of living in the world.
As I walk this pilgrimage with dementia, I realize how important it is for me to forgive the hurts, betrayals and injustices of my past. My shrinking brain simply doesn’t have room for all that stuff. So, with each step, I’m trying to forgive those who have done me harm, and to ask for forgiveness for the harm I’ve done in my life. More and more, I’m coming to realize that forgiveness actually makes room in our hearts and minds for joy and love.
While I would have never, ever wished for this diagnosis, in a strange way, I am grateful for it. Dementia has opened up my world in ways beyond my imagination. It has helped me to see the preciousness and uncertainty of life. It has provided Emily and me with a new adventure in togetherness and introduced us to new friends all over the world. My condition has forced me to slow down and smell the roses. It has humbled me. And, It has called me to what others say might become the most important chapter of my ministry. I’ve decided to view my dementia in a way similar to how the Dalai Lama refers to his exile, as “an opportunity to get closer to life.”
One of my daily spiritual practices is to offer gratitude, trying (to the best of my limited, short-term memory) to name those people, places, and moments that have been there for me during the day. And that practice is most important to my well being and most meaningful on those days when I’m not feeling very grateful.
I get asked all the time why am I traveling so much in my “retirement.” Isn’t it exhausting? Isn’t it painful? Isn’t there anything else I’d rather do? And the answer is yes and no. The preparation, logistics and travel can be very tiring. And talking about dementia (especially the injustices and the end-stages) sometimes makes me sad. But honestly, there isn’t anything else I’d rather do. It’s a privilege, a joy, and good “medicine” for my brain to explore the spirituality of dementia, advocate for people living with dementia and help destigmatize this dreaded disease.
And I hope you will find and cultivate joy in your life. But first, read, mark and inwardly digest The Book of Joy. You’ll find it a very helpful guide. – Tracey