Answer in the Sky

Unwillable’s poignant words, “My rosary has broken and my beads have all slipped through,” aren’t mine, they’re Elton John’s. He sings them in his song, Sixty Years On. (He opened with it at his 60^th birthday concert, which I have on DVD. And I don’t often wonder why I’m labeled as weird …)

Late in my writing, it hit me to use some of my favorite Elton lyrics to flow with the story. I used that phrase to divide the grueling onset from the challenging recovery. It felt fitting of the days I was at rock bottom, trying to pray myself back to life. When I quite literally clung to my rosary beads.

Right prior to our departure for the Mayo Clinic in June 2018, about the time my memory starts firing again, I opened the top of my jewelry armoire, where special keepsakes lie, and fished out a silver, Jesus-adorned box. It contained my rosary, the one I grew up using. It was my great-grandmother Ann’s, a devout Catholic from Italy, and was given to me by my grandma, Wanda. I can’t imagine I’d seen it since … high school? … but I knew right where it was.

Much to my dismay, when I opened the box, I found that my rosary was falling apart. The small, amethyst-colored beads, literally crumbled in my hand. I gently put it all back and lamented the loss. I was devastated. Not only was it an heirloom, but I needed it. I was on the rosary-finding-mission, because I believed it was vital for me to hold it in my hands at the appointments that determined my fate.

Never one to be deterred, I found another rosary. It had coarse, pink beads, and was inside an unopened plastic package. It carried virtually no sentiment (I assume a Catholic Confirmation gift), but from the moment I grabbed it, it went to Mayo with me, hardly left my hands for over a year, and has traveled with me in my purse ever since. I genuinely don’t leave home without it.

As Unwillable went to publication, Elton really struck a chord. I’d been using an unknown pink rosary for four years, because my great-grandmother’s purple one was broken, and the beads had all slipped through. Yet leading up to 2018, I was blissfully unaware of its fragile condition. And that of life’s.

I hadn’t physically held my beads in years, and I had never learned how to say the rosary by myself. But with my Catholic upbringing, the tradition always felt significant. So much so, that not too long before I got sick, I mentioned to Mom that she should teach me.

She sent me a cheat sheet and book to use. But I never got around to looking at them, because it wasn’t of the essence. I believed my willpower gave me everything, and I was following the equation of success. When in all reality, I was busy burning out, running on fumes, billing, and hopelessly trying to fend off a merciless and unknown illness that was about to implode my life.

Autoimmune encephalitis (AE) changed my life and everything I knew, overnight. I lost my mind, agency, and career, and I nearly died. As the weight of the world came crashing down and the winds of defeat sailed through me, I felt suffocated by doom and despair. I had lost everything. And was in desperate need of something.

But what? What could possibly salvage the wreck I’d become? Or revive me?

I didn’t have to ponder too long, because I knew the answer.

I still had something.

Faith.

It was the only thing that could save me. It was all I had to reach for. That and my all but forgotten rosary.

I knew I had to start somewhere, so I’d begin one bead and prayer at a time. If I could still believe, faith would take it from there.

The trip to my jewelry box seemed insignificant at the time, but it was the first actionable step I took on my journey to SuRvive, Recover, and Rebuild post-AE. And it was a big one. Because it gave me something to hold on to.

Through those steroid-infused insomnia nights that first week at Mayo, I sat on my bed and cried silent tears while holding Mom’s small book and my rosary. Working my beads was comforting, but it was also quite challenging for me as my confused brain and poor memory struggled through the patterns and Hail Marys. Yet once we returned home, I remembered another way I could go about it that would be less taxing mentally and make me happy: I’d call on Fr. Pete.

During the fall of my junior year of high school, an inspirational, Chicago-sports-obsessed Reverend was in Bowman preaching a weeklong mission, and I immediately took to him. He knew his stuff, was funny, handsome, and could also sing. I willingly attended the whole week, and after his final night, spent some time chatting with him.

A few weeks later, I sent him a note thanking him for his time in Bowman. That was back in the old days, in the year of our Lord, 2000. When we wrote letters and put them in mailboxes. And in what was great news for me, Fr. Pete not only wrote me back, but we became pen pals.

I saw him only a few times after that, but we always kept up, and he gave me a lot of pep talks. He even agreed to be one of three priests and a Lutheran minister who attempted to ease Sean’s fear of marrying me. Suddenly, I wasn’t the only one who adored Fr. Pete. His presence and homily telling Sean, “I hope to God you know what you’re doing!” were the wedding’s greatest hits.

About the time of his growing stardom in the greater-Bowman area (and all over the U.S.), he released a CD in which he led the rosary. It’s complete with music and a group that offers the refrain to his call. Although I purchased it for Mom, I never had a copy.

In my post-Mayo eureka moment, I recalled Fr. Pete’s recording and knew that listening along would be helpful and easier. It was the year of our Lord 2018, so I didn’t have a Discman anymore (absolute bummer), but I was able to download it to my phone from Amazon Music! Problem solved.

From there, Fr. Pete prayed with me morning, noon, middle of the night, and on airplanes and car rides to Rochester. While I (always) cried, when I didn’t, while I couldn’t sleep, when I was (always) afraid, and every time in between. My pink beads in my trembling and fidgety hands, and his voice, got me through my darkest days.

As the years of me carrying my prayers and Fr. Pete with me progressed, I never contemplated another rosary dilemma. Until just the other night when I grabbed my purse and reached for it. And out it fell, in three pieces. I was so upset.

Once again, I was in immediate need of my rosary. Yet I was reduced to angrily humming and lamenting my beads slipping through, rather than being able to use it. It was vital for me to have one right now, and thankfully, I found a backup. I needed to start praying for a little boy: A.E.’s preschool friend for two years, Jagger.

Jagger was recently diagnosed with leukemia and the news hit me like a dagger in the heart.

Jagger and A.E. are only five.

This can’t be. It just can’t.

Since last August, a dear friend’s eight-year-old, Eleanor, has been battling a tumor near her ear and jaw. Her mom, baby sister, and grandma packed up and moved from Bismarck to Rochester, so Eleanor the Brave could doctor extensively at Mayo, while her dad and other sister went between life in both places.

When I first got the news of Eleanor’s cancer, I felt helpless, and afraid. And while I knew I couldn’t do much for her, I believed I could do something. So I got out my beads.

Like many others, I said a lot of prayers and followed her journey in awe. That sweet little girl marshalled an unbelievable amount of courage and grace, and her parents kept the wisdom, sacrifice, and faith necessary to see her through traumatic and frightening decision after decision. It was all at once a sight to behold and painful to witness.

Not long ago, Eleanor’s mom, Tiff, sent out the call for prayers. Eleanor was too sick to receive a treatment, which was devastating and scary. I stopped then and there, closed my eyes, and said Hail Marys. And I kept hoping and believing.

One year later, all those prayers dispatched for Eleanor the Brave from friends, family, and strangers were answered. She completed treatment!! Hallelujah! After 300+ days away, Eleanor’s port is out, and she’s back in Bismarck!

I felt the glory of it all when I saw a photo of her taking her first family trip. Her little bald head. Her boogie board. And the water. She was the literal embodiment of Just Keep Swimming. A miracle to behold.

And just as I began to ride Eleanor’s high wave, the news of Jagger came crashing down.

Bismarck’s a small place. During the first year of preschool, I recognized Jagger’s dad from college. His mom and I chaperoned school events together. And at a Y ball game a few months ago, as A.E. and Jagger played against each other, I met his grandma who knew my aunt in Arizona. His aunt is married to my cousin. His people are my people. And they’ve just been tossed into a nightmare.

This all hurts. And feels so heavy. Yet what can I do?

Something.

Start somewhere, one bead and prayer at a time.

Just like I’m an active learner, I’m an active pray-er. When it was my health, and I could only do so much to manage the unmanageable, I turned to my rosary. When I had nothing but fear, faith, and a dash of hope, I repeatedly prayed Hail Marys. And I won’t stop.

In 2019, a UND football player, the indefatigable Hunter Pinke, was in a skiing accident that left him paralyzed. I’ll always remember the piece my dear “Uncle Tony” Bender wrote about statewide prayers for Hunter “springing like sparrows and dotting the pewter sky.” I often recalled it when I knew entire communities were sending up the birds to Eleanor in Rochester.

And I see them taking flight once again for Jagger, the dark-haired hockey playing UND loving little boy. I felt the sheer force when we gathered at his church just the other night. When a large group of friends, family, and maybe complete unknowns came together to pray a rosary for him.

Miracles are everywhere, you just have to believe. And look for them. Rachel’s dimes and Dad’s feathers. Our little angel, A.E. My recovery from autoimmune encephalitis and all it threw at me. Eleanor swimming. I believe.

And I trust in the power of prayer and communities coming together for special intentions. I felt it when the sparrows dotted the sky for me. It gave me hope.

As for my rosary, I took it to a jeweler who assured me that although she’s not Catholic, she once fixed a Sister’s rosary, so she believed herself to be fully qualified. It’s already back in my purse.

Just Keep (Skating), Jagger! Like Eleanor, you have lots of people who love you. And you’ve got Better Days Ahead!

JM Stebbins family, beads if you have them, no problem if you don’t, please join me in sending up the birds for these kiddos and all others, including a ten-year-old in my son’s class and a dear high school gal in my hometown of Bowman, all fighting this dreadful battle.

“[L]ook at all the sparrows. So many sparrows.”

Love,

jackie

"Well they say that it's a fact

If you watch the sky at night

And if you stare into the darkness

You might see celestial light

"And if your heart is empty

And there's no hope inside

There's a chance you'll find an answer in the sky

"Well they say that it's a shame

If you have nothing to believe

And if you can't hold on to something

You might as well die where you sleep

"You don't need a prayer

And there's no price to ask why

Sometimes you'll find an answer in the sky" ~ Answer In The Sky by Elton John

__________

/ / The JM Stebbins blog is an autoimmune encephalitis blog from former lawyer and autoimmune encephalitis survivor, Jackie M. Stebbins.

Jackie M. Stebbins is also the author of Unwillable: A Journey to Reclaim my Brain, a book about autoimmune encephalitis, resilience, hope, and survival. //

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