Guts, grace, and guardrails.

Some moments drain the blood from your brain and leave your feet frozen in place. What do you do when fear finds its way into your soul?

I stood at the intersection of two paths, a ferris wheel in front of me, a terrifying and thrilling roller coaster behind.  To my right, the friendly merry-go-round beckoned, but my feet remained rooted in place. 

“Don’t move from this spot!” Grandma had said.  Quite a few minutes before, actually. 

“I’ll be right back,” she said, and intent on getting us ice cream before the circus began, she took the path to my left.

Only my grandmother hadn’t come back.

I waited. 

I watched. 

I wished. 

I worried. 

The hands on the clock kept moving—fifteen minutes, thirty.  My older sister fidgeted and eyed the ferris wheel with longing. 

“Maybe we can go for a ride while we wait,” she said, fishing in her pockets and offering me some spare change.  I shook my head, fear keeping me frozen in place.

I could not move from the spot assigned by Grandma, nor could I conceive of any solution to the dilemma.  But Chris, more resilient and resourceful, dared to ride the ferris wheel once or twice, and checked her watch from time to time.  After another hour had passed, she left me rooted in place to find a pay phone, where she reported the situation to our father. And soon thereafter my tearful Grandmother called him, too:

“The children are lost!” she wailed.

Dad told her where she could find us, and a kind worker escorted her to us, tears streaming down her face and melted ice cream dripping its way toward her elbows.

A little piece of fear found its way into my soul.

The circus was lovely, but it was overshadowed by the strangeness of what had just happened, and a little piece of fear found its way into my soul.  It took root there and lurked in the background, a shadowy figure that felt threatening. 

I did not yet know the word “Alzheimers,” but in the months that followed I watched my dear grandmother slowly unravel, forgetting things, losing her way, repeating herself.  To a nine-year-old this erosion of dignity somehow felt wrong, scary, and somehow shameful.  “It shouldn’t be this way,” the little girl inside me believed.  And honestly, the specter of dementia has hovered quietly in the background ever since.

My beloved Grandmother faded sweetly, and after such alarming reports as Grandma driving her little Toyota down the sidewalk, we eventually tucked this creative, colorful, resilient woman into a memory care facility.  Many years later we shepherded each of my parents, too, through dementia and into a care home.  

And now I have my own diagnosis. 

“Mild cognitive impairment,” the doctor said. “It’s not Alzheimers, though you do have Alzheimers pathology.” 

He’s referring to the amyloid plaques a PET scan revealed in my brain, the classic tangles that accompany Alzheimers disease.  He assures me that many people with amyloid plaques die without ever having Alzheimers.  But I can’t help noting in his post-visit notes that future Alzheimers is listed as “likely”.

While the news was not a surprise, I still confess to a bit of a chill gripping my heart. The truth is, I'm standing at the crossroad of what was, and what will be. Several adventures ranging from gentle to terrifying are spinning within my vision, and I can't help but try them all on for size.

Half of me, I find, is still that little girl, afraid and frozen in place.

Is it actually possible to not feel shame or fear, when being realistic means acknowledging the potential of a diminishing life?  How can life, impaired, possibly be good?  How much failure, “un-success”, and embarrassment will trip me up between here and the finish line? 

How do you live life fully, even while you face the potential of failure?  And when do you shrink back to protect the little girl? 

I suppose "shrinking back” can be either wisdom or shame speaking, and I’ve got to split that one right.  I need to find a way to step past the shame and into the light.  And I also need to protect the girl. 

So just how does one live with guts, grace, and guardrails? 

. . . . . . . . . . . .

“Shrink back.” That phrase won’t let go, so I flip to Hebrews 10 to find it. 

The context there (the persecution of the early church) is vastly different than accepting an unwelcome diagnosis, but I find in it some similarities, including facing the potential of suffering, loss, public exposure or ridicule, even the potential confiscation of your property.  And in this passage we also see these same folks partnering in the midst of loss with other “sufferers”, offering sympathy, finding acceptance, joy, and confident hope for the future. Here it is:

Remember the early days that you were in the light. In those days, you endured a great conflict in the face of suffering.  Sometimes you were publicly exposed to ridicule and persecution; at other times you were partners with those who were so treated.  You sympathized with those in prison and joyfully accepted the confiscation of your property, knowing that you yourselves had a better and permanent possession.

Hebrews 10:32-34 BSB

What a beautiful template for me, and for anyone else facing potential loss!  And then the author (Paul? Barnabus? Luke?  No one is quite sure…) continues with this:

So do not throw away your confidence; it holds a great reward.  You need to persevere, so that after you have done the will of God, you will receive what He has promised.  For, “In just a little while, He who is coming will come and will not delay. But My righteous one will live by faith;i and if he shrinks back, I will take no pleasure in him.” 

But we are not of those who shrink back and are destroyed, but of those who have faith and preserve their souls.

Hebrews 10:35-39 BSB

How beautiful is this!  It addresses all my tendencies to quietly step back and hide.  "Don’t throw away your confidence." Persevere. Grab a firm hold on faith.

And don’t shrink back.

. . . . . . . . . . . .

Yes, I'm still half that scared little girl. But there is another half of me, too. This one, the grown-up, faith-filled me, finds that a well of strength and resilience and wisdom and courage and laughter has been planted deep within me by the Spirit of God. 

So I reach out protectively, wrapping one arm around the little girl.  Together we take a deep breath and step out. As we do, I slip my hand into my proverbial pocket and fiddle with the spare change hiding there.  There’s fear in my heart but a twinkle in my eye as I grab the girl’s shoulders and look her square in the eye:

“Let’s go ride that roller coaster!” I whisper. 

. . . . . . . . . . . .

Anybody else where I am? Can we talk about it?

Guardrails are important when you’re riding a roller coaster.  Plans and wisdom and maybe a buddy to ride along with you.  But staying rooted in fear, or quietly shrinking back out of shame when you still have some change left in your pocket and some spunk in your soul? 

We are not of those who shrink back.  Let’s do this. Together.

In my journal when I get brave enough to blurt out a hard truth, I have a habit of writing this:

THEREISAIDIT!

My first unshrinking step is to not hide my diagnosis, but to invite you into the story.  And as I do, I feel the roots of shame loosening under my fearful feet. 

I’m already moving forward with purposeful action, working hard at getting a full eight hours of sleep, taking more breaks.  I write notes, jot down reminders, rehearse names, take hikes, seek the sun, and stop to slow my breathing and count my blessings.

I also say “Did I tell you this already?” way more than I used to, forget what I came into the room for, and just now I found my phone in the medicine cabinet.

Whether cognitive decline is ever your story or not, it’s one of the things we’re likely to talk about a lot here on the blog.  Let’s bring all the scary things out of the dark.  Let’s not shrink back.  Let’s grab some spare change and the hand of a friend and ride that stinking roller coaster!

Let’s keep on Growing, Old.

Strength and dignity are her clothing,

and she smiles at the future.

Proverbs 31:35 NASB