Pilgrimage or Death Sentence by Liisa Ogburn

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

traceylind2jpg-f1310bdaab2a83a4.jpg

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.

A prayer for courage this holiday season

Today is December 2, the first Sunday in Advent and the first night of Chanukah. It really does seem that time is flying by like the migrating birds outside my window.

pasted image 0.jpg

It has been said that time seems to accelerate as one gets older. According to researchers, it has something to do with perception and relativity. I’m experiencing it, but I can’t comprehend it.

There are a lot of things that I can’t comprehend these days: how migrating birds can figure out where they’re going; how the brain works; how some people can be so cruel, and others so kind; and how come I always lose one piece of every puzzle.

drag-drop-file-0.jpg

Maybe I don’t have to comprehend it all. Maybe I can just receive the mysteries of life with gratitude and grace.

On Friday, I spoke at the City Club of Cleveland. This venerable forum of public speech was filled with friends, colleagues, parishioners, neighbors, and strangers; and many more were listening on the radio or watching through the live stream. I spoke about dementia from the inside out, sharing my story and the life lessons I’ve learned over the past two years. It was a strange homecoming.

People tell me that I’m transparent, vulnerable, and courageous for publicly acknowledging and talking about my dementia.

I’m being transparent and vulnerable because I feel called to share this journey with others in an effort to demystify and destigmatize it - to demonstrate that there can be a rich and full life post-diagnosis. I believe that preachers are called to live our lives out loud, making sense of them through the sacred text, and in doing so, helping others to make sense of their lives.

But courage? I don’t get it. I don’t comprehend the risk of speaking about my dementia. I really don’t have anything to lose. I voluntarily stepped down from my job, and I’m not going to lose Emily or my family. If I lose any friends because of my dementia, then they weren’t really friends. And most importantly, speaking this truth won’t advance my dementia, at least I hope not. In fact, I think its good for my brain.

I’m fortunate. I know people living with early onset dementia who lost their jobs before they were able to retire or get disability. I know people whose spouses, families and friends abandoned them in their time of need. So yes, I’m one of the lucky ones.

But there’s more to it. When I go to the essence of that word “courage,” what people are saying to me begins to make sense. The root of the word “courage” is “cor,” which in Latin means “heart.” So to be courageous is to speak the truth from one’s heart. That is what I am doing. That is what Emily is doing. We’re speaking about dementia from the inside out - straight from the heart. So maybe we’re both courageous.

What would the world would be like if we all were courageous and spoke from the heart? I think it would be a beautiful place - the realm of God on earth.

So as I light my Chanukah and Advent candles this year, I’m going to start praying for everyone to be courageous and to speak truth from their hearts. God knows, that’s what the world needs now. - Tracey

If you want to listen to my City Club Forum, you can find the link here.