It’s been two years since, in the words of Dante, “I came to a dark wood wherein the direct way was lost.” Emily and I have covered a lot of territory on this journey - literally and figuratively - travelling in three-month segments, like the old quarter schedule in college.
Three months of testing that led to a diagnosis of Mild Cognitive Impairment (translate: they weren't sure what was going on)
Three more months of testing and therapy that resulted in a diagnosis of early stage dementia, probably FTD
Three months of wrapping up my career and bidding farewell to Trinity Cathedral
Three months of grief, relief and escape, including a 2,000-mile road trip and a 4,000-mile ocean voyage.
It has been an extended season of both physical and spiritual traveling. After crossing the ocean during Holy Week last year, I found myself ready to face this new chapter of my life, realizing that I wanted to transform this unwanted interruption from a death sentence to a pilgrimage.
Emily and I are both pilgrims. We’ve been on pilgrimage to Taizé, Glastonbury, Chimayo, Iona, the Holy Land, Assisi and Canterbury. In 2009, we walked El Camino de Santiago, the most profound and challenging pilgrimage of our lives.
For the last nine months, we’ve been on yet another pilgrimage. We’ve adopted some basic principles for our journey into this strange land of dementia.
Go where you’re invited and do what you’re asked to do.
Wherever you stand, be the soul of that place (Rumi).
Hold hands, especially when crossing a busy street or walking into a crowded room.
Don’t be embarrassed, afraid or too proud to ask for help.
When life gets overwhelming, walk in a park.
Make lemonade out of lemons, and then drink it.
Over the summer, we learned how to live with dementia and find meaning in it. During the fall, we traveled to Europe, where I preached and taught; and over the winter, we did the same on this side of the pond.
In February, our pilgrimage with dementia was interrupted by a night dream. In my sleep, I received a visit from my oldest friend in the world who is a doctor in California. During this dream, he said he had something important to share with me. I contacted him the next morning and arranged to visit him. He asked me in advance of our meeting to read an article about an alternative perspective on the treatment of dementia.
We met for dinner and then again for breakfast. Over morning eggs, he said, you don’t have to give in to dementia. You can slow it down and maybe even reverse it. But it will take some work. Are you willing?
I tentatively accepted his invitation, and thus began yet another three-month segment of our pilgrimage that involved spending Holy Week and Easter in California. Since people always ask for specifics, I’ll share some of my new “treatment.” We eliminated wheat from our diet and are trying to eat organic and on the low glycemic scale. I’m fasting for 12-14 hours a day, taking a few doctor-prescribed supplements, drinking lots more water, and being very intentional about meditation, yoga and exercise. We are improving our sleep hygiene: getting a king-sized bed, installing blackout shades, and trying to not use electronics right before going to sleep (not easy). I have done some metal and chemical detox, and I’m having regular craniosacral therapy.
I’m learning how to avoid busy intersections and crowded parties, and how to ask for help at the airport. Through speech therapy, spell check and Google, I am learning how to do work arounds when I can’t find words or make sentences. I’m also discovering how to use technology to compensate for my lack of executive function. Through physical therapy, I’ve learned how to recover when I start to fall, and how to walk with my head up high. I’ve organized my closet and minimized my wardrobe so that I don’t get overwhelmed in selecting outfits. I look at menus in advance of arriving at the restaurant so I can slowly decide what to eat. I’ve limited my daily activities and conversations so I don’t get too tired or run out of language. I try to avoid noisy bars and restaurants, sit with my back to the screens, and sometimes ask that the screen nearest me be turned off. I’m also learning to pay attention to my breathe when I get startled, overwhelmed, frustrated, frightened, or angry.
So, how am I doing? Well, I’ve lost 12 pounds; my blood pressure is at an all-time low; my knees don’t hurt so much; my muscle stiffness and spasms are under control; my head feels clearer; I have more energy; I’m not falling when I trip; and I’m not stuttering as much. But I still struggle with conversation and executive function, can’t recall names or recognize faces, and run out of language at the end of the day. I still can’t handle big crowds, coffee hours, or loud parties. I get anxious while driving in congestion; find reading difficult; and shuffle when I’m tired. I struggle to have deep, meaningful conversations — something I miss more than anything. I sometimes get confused when dressing in the morning, and I get panicked and frustrated when trying to move too quickly. I can’t manage more than one thing at a time and don’t like my routine interrupted. And yes, I have embarrassing outbursts and meltdowns, both in public and in private; fortunately, I don’t usually remember them when they are over.
The big difference is this: While we acknowledge that I have dementia, Emily and I no longer consider it a terminal disease with a countdown clock. We now think of it as a chronic illness that we can and will manage to the best of our ability for as long as we are able. Moreover, we are determined to craft a rich and full life with it — all the way to the end.
So after two years on this pilgrimage, we’re doing pretty darn good. Even though I’m trying my best to live in the present, I am interested in what will happen in the next three-month segment. Stay tuned for an update. In the meantime, I hope you enjoy some of my favorite photographs from our 2009 walking pilgrimage on El Camino de Santiago.