Celebrating victory with Princess Leia

Cochlear implants are a bit like a video game. As I grow more experienced, new levels/skills are unlocked. A sector of my brain’s auditory cortex seems to open up every couple days, allowing me to enjoy a new noise or song. I began with Johnny Cash, transitioned to Marina and the Diamonds, then Hillsong United. Then entire playlists. But the holy grail of music listening has evaded me: uh, Princess Leia’s Theme.

Ok, I understand the snorts and the raised eyebrows. But Princess Leia’s Theme is an ethereal piece of music for me. It makes me think of heavenly Cloud City and its tantalizing plot, of my childhood (Empire was my first Star Wars film), of the ineffable Carrie Fisher — a true princess of the nerdy underdogs.

I live unabashedly as a Wars fan. I turned to it when I was bullied as a kid (partly for being a nerd, but whatever) and when I had the beginnings of panic attacks in my later years. I blasted it in Kristina’s car as we looked out across a field in my old hometown. This was in the days of my waning hearing — I cried as I realized I could wake up the next day and be unable to hear the song at all.

I avoided this song for weeks because it sounded awful the couple times I played it since getting the cochlear implants. My brain has never been tormented by more horrendous ‘music.’ But I had my implants tuned today by an audiologist and got some new processors. Plus, the audiologist did some tests and said I’m doing “better than average” with my hearing compared to others at the same stage as me with their implants. So, I figured it was time to revisit Leia once again.

The song was maybe two notes off but it was glorious. The first day I arrived in San Francisco, deaf and on oxygen, I gazed at the setting sun and thought, “Everything will be just fine.” I looked out at the setting sun of San Francisco today as Princess Leia’s Theme played and thought, “It’s no Cloud City, but everything is fine.”

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I spent four days in a row hanging with new friends from church, six days writing my memoir (14,000 words in), nine months of excellent health, two months of hearing, and I’m about to enter two months of holidays. I can listen to Christmas music this time! And, of course, a new Star Wars film is on the horizon. Life isn’t too shabby.

The grief I spoke of in the past few posts is now a blemish in life where it once was a vortex. My anxiety is also dulling and I’ve been keeping myself busy enough to distract from feelings of trauma. Things aren’t perfect and the mental problems could certainly gain powerful again. But I’m getting through.

Carrie Fisher was an advocate for taking care of your mental health while acknowledging its presence and power. Listening to Princess Leia’s Theme as I write this, I’d like to think she’d be proud of me for getting through and being open with you all about it.

“I am mentally ill. I can say that. I am not ashamed of that. I survived that, I’m still surviving it, but bring it on.” – Carrie Fisher, 2000

“We have been given a challenging illness, and there is no other option than to meet those challenges. Think of it as an opportunity to be heroic — not ‘I survived living in Mosul during an attack’ heroic, but an emotional survival. An opportunity to be a good example to others who might share our disorder.” – Carrie Fisher, 2016

23031592_555002194835735_8794464212676984806_nPS: I got my feeding tube removed after seven years! Now it looks like a second belly button. Annnd the median life expectancy for those with cystic fibrosis got raised to 47 (up from 41)! This is on top of there being more adults with CF now than children. These are ‘just’ statistics and it isn’t as easy as “all kids with CF will live to 47 — heck, it’s not even an average, but a median. But any progress should be celebrated.

It’s time we retire the old labeling of CF as a “childhood disease.” CF life expectancy doesn’t directly affect me since I got a transplant, but I’m still excited for my little cysters and fibros! I pray they experience a much different life of CF than I did.