When We Don’t Get to Know
My dad was one of the smartest people I've ever known.
He was incredibly bright, insightful, analytical. His mind was a big part of who he was—and I think a big part of how he saw himself.
I get a lot of that from him. (If you've spent any time with me at all, you're probably not surprised by this.)
Dad was a thinker. A problem solver. He approached things mind-first.
So there was something especially cruel about watching Alzheimer's slowly take that from him.
Dad was diagnosed with early-onset Alzheimer's in 2006 at age 61. He lived with the disease for more than a decade, and over those years, we watched it change him bit by bit.
My mom was his primary caregiver. I was much more on the sidelines, so I don't pretend to know everything she experienced—or what so many other families caring for someone with Alzheimer's experience.
But I watched.
And it was hard.
Yet there's another part of having a parent with early-onset Alzheimer's that I don't talk about very often.
Could this happen to me?
Years ago, while Dad was still living, I learned that there can be a stronger genetic connection with some forms of early-onset Alzheimer's. And being the person I am, I did what came pretty naturally.
I asked my doctor whether there was testing I could do.
Because that's what I do with problems.
Give me the information. Let me understand what I'm dealing with. Then let's figure out what to do about it.
But before my doctor really answered my question, he asked me one of his own:
“What would you do with that information?”
Well.
That gave me pause.
Because I wasn't sure.
If testing told me I was at greater risk, what exactly would I do differently?
Would knowing help me make better choices?
Would it help me prepare?
I knew that if I decided not to find out, I'd always carry some level of worry.
But I also knew myself well enough to know that if testing showed I had a high likelihood of developing the disease, I might let that knowledge cast a shadow over a future that hadn't happened yet.
I might be tempted toward despair.
So I decided not to pursue it.
Not necessarily forever.
But for now, I don't need to know.
Wanting to know before we can know
I've thought about my doctor's question many times since then—and not only in relation to Alzheimer's.
There are so many things we'd like to know before it's possible to know them.
Will the medical test come back clear?
Will the person I love be okay?
Will this job—or relationship, or business, or ministry—work out?
Will I have enough money?
Am I making the right decision?
What will happen if I take the risk? What will happen if I don't?
Sometimes more information helps. Sometimes there is something we need to learn or understand before we can make a wise decision.
And sometimes, no matter how much we think and research and analyze, we simply don't get to know yet.
Somewhere along the way, I've realized something I don't think I fully understood then.
There are things I can do without knowing.
Taking steps
When it comes to my own concerns for the future, here’s what that’s looked like for me.
Over the past year especially, Chris and I have become much more intentional about taking care of our health—moving our bodies, paying attention to what we eat, and making choices that support not only our physical health but our brain health as we age. (We're getting quite good—and quite competitive—at the games on the Lumosity app!)
I have no guarantees about what any of that means for my future.
But I don't need a test result to tell me those are choices worth making.
And there are other steps I can take, too.
Literally.
For many years—probably close to 20 now—Chris and I have participated in the Walk to End Alzheimer's to raise awareness and funds for Alzheimer’s care, support and research.
One of the most meaningful parts of the Walk for me happens before we ever start walking.
It's called the Promise Garden.
Every walker carries a colored flower representing their connection to Alzheimer's. Some carry orange flowers to show that they support the cause. Some carry blue flowers, a sign that they are living with Alzheimer's or another dementia.
For many years, we carried yellow flowers—the color for those caring for or supporting someone living with the disease.
Now we carry purple.
Purple means you've lost someone to Alzheimer's.
Even typing that gets me a little choked up.
During the opening ceremony, people raise their flowers. You look around and see all those colors, all those people, all those stories.
And then they bring out one more flower.
A white one.
The white flower represents the first survivor of Alzheimer's.
No one in the crowd carries that one yet.
Someday, they tell us.
Someday.
And every single year, that gets me. I am not an especially easy crier—particularly when it comes to my own life—but I cry at that white flower every time.
Because I know something of what this disease takes.
And because I also know what that white flower represents.
Hope.
I still don't know whether Alzheimer's will someday be part of my own story. Maybe someday I'll decide I want more information about that. Maybe I won't.
And I don't want to pretend that choosing hope means I never worry about it. I do.
But there's a difference, I think, between acknowledging what I fear and allowing that fear to determine how I live.
Maybe that's what I've been trying to do all along:
Live with the uncertainty without letting it have the final word.
Make the choices that are mine to make now.
Put my energy toward the future I hope for rather than despairing over a future that may or may not come.
Walking toward hope
That's the kind of hope I want to practice.
A hope that does something.
I can take care of myself as well as I know how.
I can support the people and families living with this disease now.
I can support the work being done to change its future.
And I can walk.
I always say that I walk for my dad.
And I do.
But honestly, I walk for me, too.
I walk for Chris. For my brother. For my niece and nephew. For people I love. For all of us who don't know what our own future holds.
And I walk with hope toward the day when someone finally gets to carry that white flower.
Chris and I completed this year's Walk to End Alzheimer's recently, but our fundraising page is still open. If this is a cause that matters to you, too—or if you'd simply like to help us walk toward that white flower—I'd be grateful for your support.
Like this blog?
Sign up to get new posts delivered directly to your inbox!