Pilgrimage or Death Sentence by Liisa Ogburn

Originally published as part of the Aging Well column, WRAL.com


It was when she didn’t recognize her face in the bathroom mirror that Tracey Lind knew she could no longer ignore the troubling signs.

She was 62, Dean of Trinity Episcopal Cathedral in Cleveland for seventeen years and at the top of her career when she was diagnosed with frontal temporal dementia. Frontotemporal dementia (FTD), according to the University of California at San Francisco medical website a “group of related conditions resulting from the progressive degeneration of the temporal and frontal lobes of the brain. These areas of the brain play a significant role in decision-making, behavioral control, emotion and language.”

Several weeks ago, I heard Tracey and her partner, Emily Ingalls, speak at Christ Church in downtown Raleigh almost two years exactly after Tracey was first diagnosed.

“When I got the diagnosis,” Lind said, “the neurologist told me I needed to get my affairs together, quit work and accept reality. We had just built our dream house and we suddenly needed to put it on the market.”

Emily said, “I had dreamed of us walking down the street to visit neighbors after she retired. I had not dreamed of this.”

Tracey stepped down from her job. They read everything they could about FTD. They sold their dream home to move closer to family. They did a hard look at their finances and what their health care needs might cost. The picture wasn’t pretty.

In grief and somewhat on a whim, they bought two cheap tickets for a cabin on a cargo ship hauling goods across the Atlantic. The ride to Europe would take 14 days.

“Somewhere along the route,” Tracey mused aloud, “I understood that I could see this next phase as a death sentence or a pilgrimage.”

Our human tendency is to do the latter—but for whatever reason, Tracey—near the end of cross-Atlantic journey, made up her mind to do the former. “I’ve watched so many people be ashamed or try to hide their dementia. I wanted to start teaching about it from the inside out.”

Emily said it wasn’t that cut and dried for her. When she told her side of the story—which makes their presentation all the more powerful—she openly shared that that first year she felt stuck in loss and anger. All the caregivers in the audience gave Emily special credit, understanding that in addition to her presentation, she was the one behind the scenes setting up the talks across the country, making the travel plans, packing the bags, managing the budget, and preparing Tracey on days when she felt her old self and on days when she did not.

Emily said, over time, she began to pray, “Please help me walk this path with the grace and skills I didn’t know I would ever have.”

In the last two years, they have told their story to thousands of people in cities around the world.

It is a story that any of us could benefit from. Who doesn't carry an unbearable load at some moment in life?

I don't know that I would have the fortitude to do what Tracey is doing; what I do know, though, is when I can step back from the challenge at hand and look at it with curiosity instead of panic and dread, there's a little room for something else to happen.

ABOUT THE AUTHOR: Liisa Ogburn is the founder of Aging Advisors NC and a twice weekly columnist for the Aging Well series on WRAL.com.