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While I didn’t sign up for them, a while back, daily inspirational quotes started showing up in my inbox. I absolutely love them.

And if I haven’t written enough times about how strange it is when irony laughs in my face, it had another LOL moment just this morning.

Today's quote was Nelson Mandela’s “I learned that courage was not the absence of fear, but the triumph over it.” Some quotes just really resonate with me and I save them, but at first glance, this one told me: Not for you, you’re more interested in resilience quotes than the face your fears to be brave stuff.

(Because seriously Jackie, what would Nelson Mandela know about resilience?!)

I quickly deleted it and moved on my way.

Shortly thereafter, I hopped in my car on a beautiful North Dakota nearing-March day (my car read -18 degrees) and as I backed out of my driveway, that dreaded song came on. It came on just days ago while I was driving with my kids. I told myself then: You can do it. Just listen to the song. But after a few seconds, I changed it.

I once had to leave the grocery store when I could hear it playing overhead.

In Unwillable, I talked about downloading new songs to take with me on my trip out of town for a two-day trial in March 2018. It’s there I said that I can point to the eve of March 26, 2018, as probably the most disgusting one in my AE-onset, because it was that insomnia-laden night that told me something was going seriously wrong with me.

I don’t know if it just feels that way now, because the song gives me the creeps, or if I really did listen to it that much at the time, but Ed Sheeran’s Perfect is the disturbing song that makes me feel like I’m in my hotel room on that terrifying night.

I downloaded it because in the version I liked, he duets with Beyoncé, which made me think of my legal assistant, Megan. We had really grown close while she worked for me, but in the fall of 2017 when my life was secretly falling apart, (sad for me, but I was happy for her) Megan moved out of state. And she’s a big Queen Bey fan.

Since waking up from AE, that song has haunted me. When I hear any part of it, my chest begins to hurt and I honestly feel sick. Trauma, grief, and the aftereffects of amnesia have funny ways of presenting themselves. For me, smells and songs catapult me to a dark place. My onset.

It’s hard to explain, but when triggered, things I recall, only vaguely remember, or even things from where I have an absence of memory overcome me and instantaneously sweep me back to that place. Which of course is a place of terror.

In the nearly five years since I lay awake feeling sickened and frightened by what was taking over me, I haven’t listened to that song. Until today.

As it began to play and I felt that tightness in my chest, I told myself: Just switch it. But then the stubborn part of me that’s done her best to heal said, What are you afraid of? And then she got louder and said, LISTENING TO THIS SONG DOESN’T MAKE YOU LIVE IN MARCH 2018. YOU ARE HERE NOW! YOU ARE NO LONGER THERE

in that really scary place. The place you’ve tried to bury and just skim the surface day-to-day.

I decided to listen to the song. To feel the feels right there in that moment. And then move on. I believed it would be a brave thing to do.

So I did it. I even sang along. And then I thought back to that quote about courage that I had so quickly dismissed just hours prior.

You can’t argue with Nelson Mandela. Sometimes to be brave, and maybe even resilient, you have to triumph over your fears. Even if the fear seems trivial to everyone but you. And for sure when it feels scary.

Someday I’ll be unironic, but not today.

Just keep swimming.


“Baby, I’m dancing in the dark With you between my arms Barefoot on the grass Listening to our favourite song When you said you looked a mess I whispered underneath my breath But you heard it Darling, you look perfect tonight

“I have faith in what I see Now I know I have met an angel in person And she looks perfect” ~ Perfect by Ed Sheeran


/ / 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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