I Am a Prodigal Son

My favorite Jesus-told parable is the prodigal son — the lost (and found) son. It’s a vivid illustration of the brokenness of man and grace of our Father. It’s the story that influenced my return to God’s arms.

The story in a nutshell.

In the parable, a wealthy man’s youngest son demands an early inheritance. In ancient Jewish culture, that’s tantamount to a son wishing death upon his father. It is a rejection of all the work the father invested in his son’s life as well as thievery of 1/3 of the father’s resources. The expectation would be for the father to beat the son.

But no, the father grants the wish because he has respect for the son’s freedom. In “thanks,” the son squanders the money on fleshly pleasures. The father is a good father, and so he wisely foresees the son will eventually learn his lesson and return.

Eventually, the son does realize his goof-up while fantasizing about eating the pods eaten by pigs — impure animals in a society that held purity as the highest priority. As a feeder of pigs, entering a synagogue for help seemed unrealistic.

So, he turns to his pops, planning to declare, “I am no longer worthy to be your son; make me like one of your hired servants.”

Instead, the father sprinted out (undignified for an old man) to embrace and kiss his beloved son, fitting him with a beautiful robe. The father slips a family signet ring upon his found son’s finger — a restoration of familial authority. Then, he threw him a party.

(The story goes on to detail the bitterness of the older brother.)

The part where I realize my favorite parable was uncomfortably relevant.

I didn’t realize the story’s power until I heard the gasps of Muslim Syrian refugees when they heard the son demanded his inheritance and fed the pigs, or when the father/Father showed extraordinary grace.

(As an honor culture in the biblical lands, they get it. In Jordan, I certainly realized how much I’d neglected the cultural context of the Bible. I’ll discuss that more one day.) 

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The Bible stories don’t feel so far off in these lands…

In Jordan, I realized how far I’d plummeted into ingratitude. I’d been blessed with new life through way of miracles and I spent that blessing mostly on ambition and fun for several months. I felt entitled to pure power and euphoria after a childhood of suffering.

I sacrificed little, fell into obvious temptations, and ruined healthy relations through deficient discipline. I was chillin’ with the pigs and denying a beautiful plan God had in store for me. (What does “prodigal” mean? Essentially, wasteful.)

Devastated by these realizations, I prayed something similar to, “I am no longer worthy to be your son; make me like one of your hired servants.” I prayed for a cleansing of my heart and instead received refinement. It was torturous, yet a fast-track to restoration.

God jammed His hand into the soils of my heart and uprooted the corruptive weeds — traumas, unrecognized rage, shame, fears — that had choked His fruits.

Finally, I was humbled. Now that I have the heart of a servant, He has been rebuilding my identity as His son — He slips the signet ring of authority upon my finger and covers my shoulders with a comforting robe. There has been a call to ministry. I don’t yet know the specifics: “Not yet,” goes the reply when I pray for vision.

It’s this call that has reignited my dedication to leaping out of me and into Him. I must prepare.

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Let’s pretend this is God shining grace on me and not just the glow of a jellyfish tank. (Photo by Nathan Kawanishi)

I am a prodigal son; I am told not to be ashamed that I fell away, but to instead focus on the showered grace. There is the frustration that I will fall into a season of foolishness once again, yet there is also the love found in knowing I’ll be joyfully forgiven seventy times seven.

As I shack up in my Father’s house again, I am discovering and rediscovering the spiritual disciplines that strengthen my joy, prune my branches, and prepare me for ministry. Perhaps the ministry is simply sharing those lessons. Who knows?

(We know who knows.)

Springs of Various Sorts: Gratitude for Transplantation

2016 was war. 2017 was peace. 2018 is euphoria.

Spring 2017

It was a historic rainfall in Silicon Valley, the likes not seen since the days of Noah and his big boat. Los Gatos Creek spilled over and the neighborhood electricity blew out — a true tragedy in Tech Titan Valley. Mom sparked candles perfumed with vanilla, and I gently yet stiffly laid on our comfy couch with a groan and a sigh. And closed my weary eyes. I was fully deaf since spring 2016 because of amikacin barrages, but the words (typed to me a few weeks prior) of my transplant mentor, Kathleen, whispered through my mind: “Rain purifies the air. It’s a transplant patient’s best friend.”

It was my first day back at home since my double-lung transplant two months earlier. The fentanyl withdrawals had washed away along with much of the physical and emotional hurt from the surgery recovery. I felt the tight, tight, tight muscles of my body surrender to the calm of the moment. And finally, while the world outside flooded, I soaked in tranquility.

The rain brought destruction, then beauty. I was reborn in union with spring. Wildflowers bloomed along the crooked cracks in sidewalks, a fresh burst of radiant petals each time I braved the outdoors for a strenuous “stroll.” Walking took maximal effort because of melted leg muscles. I literally had to re-learn walking after my septic shock several months earlier. Stairs were the ultimate challenge, but I was getting there. One step in front of the other. What is a new life without first steps?

Spring 2018

Yosemite National Park is really something.

Yosemite Valley flooded days before I visited it. The rain brought destruction, then beauty. The wet froze into crystal, which melted into wondrous waterfalls pouring from all directions; from colossal cliff walls guarding the crowned jewel of California. Mighty trees stretched their freshly greened fingers for the sky and animals frolicked in the fat bushes and along glimmering lakes.

The waterfalls result from melted ice funneling down mountain peaks. 

The Dell family and our friends of many decades rented a cabin for a few days. I’d seen one of the friends only once since my 2011 Make-A-Wish trip to New York City — as opposite to Yosemite as you can get. And I am opposite to whom I’d been then. I’m now breathing perfectly, hearing better (thanks to cochlear implants), eating plenty. “You didn’t eat a thing back then,” said “Aunt” Kerry as I devoured steak and potatoes, chased with boysenberry pie. I’ve been playing catch-up for seven years of barren appetite.

I also couldn’t walk far back then — not without griping about chronic back pain and wheezing. And I’d walked even less so the past couple years, before and soon after the transplant. But in Yosemite, my most intimidating physical challenge (outside of the medical realm) towered far, far above me: Vernal Fall. One hundred and forty-eight floors’ worth of hiking, according to my FitBit.

Hiking up the step-stones to the falls. (Photo by Rick Dell)

I climbed and climbed and climbed. At points, I clutched handfuls of my pants and hauled my fatigued legs over tall step-stones. I came to a thickly misty area beside the falls aptly named “Mist Trail.” I pocketed my cochlear implants and glasses so they wouldn’t get drenched, and paused for a long, magical while. I struggled to breathe, deaf and nearly-blind. It was how I should be, if not for miraculous interventions.

In that purifying misty oasis, it was just me, God, and my donor. Mist mixed with tears and wind kissed it all away. Two years ago, God swore He’d pull me out of my devastating storms — deafness and end-stage CF. It seemed impossible. But as with all strong storms, there was beauty at the end.

A rainbow stretched beneath the mighty cascades of Vernal Fall. A rainbow: the symbol of God’s promise to Noah, post-flood.

Vernal Fall and its rainbow. Vernal is defined as, “of spring.”

I nearly turned back — my sister already had. But my child life specialist’s Facebook message from the week before pierced my weariness: “You keep winning and overcoming struggles.” Those words were potent; since 8th grade, she’d seen me cry out in terror for mercy more times than I can count. She knows the raw reality of my battles. And she’d always calmed me, kept me pushing. I gazed through mist at the dozens of remaining step-stones leading to the top of Vernal Fall.

Veni, vidi … vici.

Atop the cliff, nothing could smear my smile, nothing could touch me. Numerous times, I’ve said that the brutal war for my life was “worth it” for single moments: at the edge of the Grand Canyon, in the depths of Antelope Canyon, atop the peaks of the Rocky Mountains. And now, above Vernal Fall overlooking the vast valley of Yosemite and its infinite gushing falls.

2016 was war. 2017 was peace. 2018 is euphoria.

Euphoric, atop Vernal Fall.

Follow my adventures on my Facebook Page, Adamantium Joy.

This was originally posted on my column, Victorious, at Cystic Fibrosis News Today.

Looking Good vs. Feeling Good

Not a big fan of my looks, but the spirit is more important.

“Ay, there was this gorgeous girl in McDonald’s yesterday and she was with this really ugly guy. I’m like, ‘What theee??’ They start sign language-ing and then I know why she’s with this guy! Only reason she’s dating him is ‘cause she can’t get anyone better ’cause she’s deaf!”

I don’t know why my driver instructor (long story as to why I have one) chose to tell an ableist story right after I told him I was deaf. Might have had to do with him pretty obviously being high on something. And I guess I wasn’t exactly shocked since he’d also told racist and sexist stories.

Despite these considerations, I couldn’t help feeling hurt. ‘Cause self-image is something I’ve been struggling with. I didn’t realize how much of my confidence was derived from my six-year relationship with someone “out of my league.” But I reflect on the past, before Kristina, and remember loathing my body. Standing in front of my mirror before school, disgusted, muttering insults at myself about how pathetic and hideous I looked. Even picking at my skin to remove blemishes ‘til I bled. And I thought I wasn’t a “good man” because I was so physically weak. A big bundle of insecurities.

I’m not at that level of self-hate these days, six months after breakup, but regardless, I recognize that my self-hating developmental years are a foundation for how I view myself today. And today… yeah, I don’t like how I look, and I feel people think I’m weird for having cochlear implants. And I can’t stop thinking about how I haven’t gotten any matches on dating apps (which I don’t even fundamentally agree with so I dunno why I’m even on them). And I can’t stop guiltily thinking of how many times in the past I uttered the mantra, “Everything will be easy after I get my transplant and cochlear implants.”

Here I am, transplanted and implanted, worrying about things as shallow as looks.

My pastor’s wife, Julie, once visited me in the hospital and said she felt convicted to remind me that my body is a temple. That was several years ago and she was referring to me not taking care of my health. But her words ring through my mind today, beating back my doubts and refocusing me on spirituality.

A temple can be a cathedral or it can be a cave; what matters is what is produced from it — love, kindness, joy, gentleness, integrity, all that. My body is a temple and so it is defined by fruits of the spirit. Not by how “chiseled” my physical features are or if I need to rely on technology to hear. Reflecting, I think I have a pretty decent spirit. I can always do better, and I strive to, but I’m on a good track. And, spirit aside, my body is as God designed it to be — broken yet restored whole to further His plans. That’s pretty cool.

I’m trying to focus on others rather than myself: Tell that dude he’s really pulling off that leather jacket. Tell that girl her pink hair is rad. Tell my bro his workout efforts are really showing lately. Tell my buddy she’s hilarious. Building others up builds me up, too. Concentrating on loving others does wonders for my emotional stability. When I’m loving others, my spirit is full. When my spirit is full, yeah, “everything is easy.” Kind of.

As for romance, if God really has a gal out there for me, they won’t care much about my implants and they might think I look pretty ok. So, why worry?

Busy, homesick, but intentional

When I was deaf and dying and all that, I spent most of my day watching Netflix and writing on this blog. I fantasized about finally being busy again. Fantasized about having seemingly endless energy (I’ve been sick my whole life, ya’ know?). Then I got the transplant and obtained the energy I craved. But I was still deaf and afraid to approach society. So, more Netflix.

I went to a church conference in August and spent a heckuva lotta time praying about what I should do once I was able to “join society” again. A phrase kept popping to mind over and over and over: “Help people.” Can you be more specific, God? “Help people.” Like my career, or…? “Help people.” I went a bit crazy trying to interpret that.

Have you ever seen that show, Kevin (Probably) Saves the World? In it, Kevin’s supernaturally “chosen” to help the world through kind acts. I felt like Kevin. God didn’t pull me through all the horrors of the last couple years just to sit around and watch Netflix, right? So I did “charitable” things, made myself emotionally available, and even looked into theological seminary (I would be an awful pastor). Nothing satisfied the calling to “help people,” though.

My hearing was restored at the end of September. And then I shot off. I was, and am, so ready to take all the lessons I learned from the past couple years and be a positive force in the world.

Life update time (aka, why I’m not blogging much):

Months later, I have a few jobs. I’m a full-time columns editor at BioNews Services, which is a company that publishes 50+ rare/chronic disease websites. Many of the sites have patient columnists who write about their experiences living with the disease. They’re not professional writers, so I help them articulate those experiences. I’m marketing for Sixpence, which is a start-up crowdfunding app that seeks to help with social causes (including funding missionaries, teachers, medical expenses, etc.). I’m president of the NorCal Chapter for the Lung Transplant Foundation, which seeks to fund research into stopping chronic lung rejection (the leading cause of death for those with lung transplants). It also provides mentorship services. Atop all that, I’m still freelance writing one or two pieces per week. And now I’m starting down the path of becoming a youth group leader at my church.

I stare at that paragraph and feel anxiety, honestly. I can’t help thinking I signed on for too much. But then, this is what I wanted, right? In Kevin (Probably) Saves the World, he becomes obsessed with helping people and ends up helping where he shouldn’t. This results in him making situations worse or stretching himself too thin. I’ve been wondering if it’s the same case for me, but I haven’t felt convicted to drop any of the listed responsibilities. Outside the BioNews gig, all the opportunities came to me — I believe God presented them into my life for a reason. I don’t like marketing, I don’t like fundraising, I don’t have non-profit experience, the idea of interacting with youth stresses me out (I’m getting old, man). But now they’re my responsibilities. So I embrace it all and give my 100%.

The other day, I went to a transplant clinic and my doctor randomly said I could move back to Hawaii if I want to. I never thought that was a possibility since it doesn’t have transplant centers. It was the ultimate temptation. Drop everything and run off to Hawaii. It would be so easy. So lovely.

I prayed and felt God tugging at me to stay in the Bay. At least for now. And that sucked. So badly. I was reminded that I made commitments here — half of those listed responsibilities require that I stay in this area or time zone. And if I can’t honor commitments to help people, did I really learn anything the past couple years? Or am I still the Brad who ran from helping others?

I don’t know if the “Hawaii carrot” was dangled in front of my nose as a temptation challenge, or as a “this could be the future, you could come full circle, but not yet”-type thing. My heart is sad as I write this.

But then I remember that I can make real change with these new jobs. I’m able to help people with diseases and disabilities practice writing therapy, to help fund mission trips and passions and medical expenses, to help mentor youth, to help lung transplant patients live longer and more happily. I have those opportunities. How could I trade them so easily just for the selfish desire to return to familiarity?

It’s honestly hard to be in the Bay. I love the food, the microclimates, the diversity, the fun things to do. But the Silicon Valley tech corporate culture makes me uncomfortable. It can be cold, greedy, success-obsessed, a breeder of workaholicism.* Coming from Hawaii, land of “relax on the beach, aloha spirit” … it’s been a culture shock to live here. But I also believe that if I feel uncomfortable in this atmosphere, that might be a challenge by God to change things.

My hope is that I can one day return to Hawaii for good, knowing it is the right choice. But not yet.

(This isn’t a diss on the whole Bay Area. Thankfully, I’ve found really beautiful souls out here to help me, and I really am going to need their help.)

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I Declared War on My Disease — and Won.

I declared war against my cystic fibrosis after a lifetime of being a victim. One year ago, I won.

Is there a word for a phobia of dying in a hospital, of the disease you were born with? Medicladiseseamorbidiphobia?

I used to wake in the middle of the night, imagined visions fresh. Visions of myself lying in a hospital bed, dying while deaf — unable to hear my loved ones, too sick to read. Surrounded by the scent of alcohol prep and sweat, by nurses I didn’t know, by medical plastic and metal. Needles and tubes sticking out from every pore of my skin. Literally drowning in gooey globs of mucus.

I was always envious of those who say death doesn’t scare them. Some crave an afterlife more than their current life. Some are simply brave people. Some put up a tough act but secretly fear it. Others haven’t stared death in its eyes, stood in its shadow and felt small. They didn’t live life like a jug of milk whose expiration date was too smeared to read — but existent nonetheless.  And milk doesn’t last long, ya’ know?

I was rotting from the inside out, airways plugged by this disease’s literally-infectious tendrils. This disease that felt so stupid to describe: “My mucus is just too thick.” It was thick. It was so thick in my last days before transplant that I coughed up green-tan Play-Doh. You’d swear that’s what it was. When I didn’t wake from nightmares, I woke because I was suffocating.

I’m not sanitizing this post of the reality of cystic fibrosis (CF). It’s imperative that you realize its hold on my life if you truly want to understand why I continue to be baffled that I survived.

For 23 years, CF’s mucus-sticky fingers clenched my neck. It threatened my loved ones, my career, my finances. It intruded on my comfort, my mental security, my self-esteem. It paralyzed me with fear, mocked dreams.

It was the very-real Boogey Man when I was a child, hiding beneath my little rib bones. No kid should grow up knowing they have an expiration date infinitely shorter than their friends’.

I grew up hostage to CF, yet I didn’t know just how brutally it could pounce until, at 23, CF tightened its suffocating grip, squeezed the oxygen from my airways, vaporized the hearing cells in my ears, blew carbon dioxide into my brain, and poured poison into my bloodstream.

There I was. Deaf, tubes poking out, surrounded by stiff medical unfamiliarity, drowning in mucus. Dying.

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CF couldn’t ever actually hurt my loved ones, but it could turn me against them. It corrupted my mind with psychosis — an indiscriminate, Hulk-like rage unlike any I’d ever known before, directed at anything and everything. Including my loved ones.

CF could hurt me all it wanted to, but I refused to let it get away with hurting those around me. When I emerged from hallucination and psychosis, I ditched my victim mentality and declared war on CF — vengeance was mine.

When orchestrating biowarfare, masterful strategists (doctors) and tacticians (surgeons) matter. These battle-hardened titans of medicine looked me in the eye and emphasized their plan was risky. But that we would come out triumphant.

Just 5’4”, my surgeon was colossal in power and skill. She’s the type that radiates confidence without arrogance: “I will not do the surgery if I think the lungs aren’t perfect. You need to trust me,” she typed on a computer.

I looked at her and, despite my historic trust issues with a multitude of doctors in the past, nodded: “I know. I trust you.” I might have stuttered when I said it. We were talking about cutting me open, after all.

“I think you will have a very good long lifespan,” she wrote later.

After two decades of having life expectancies and survival rates crammed into my brain, this surgeon was envisioning something beyond CF. And yes, I trusted her, despite contradiction to what I’d always heard before then.

Meanwhile, a CF pulmonologist on the transplant team, fittingly named Dr. Golden, was preparing for a speech in Ireland, in which he’d present me as his “project.” He’d say I would soon be breathing, “and hearing, too!” He had a plan, my surgeon had a plan, the team had a plan. So, I planned — for a future.

Suppressing CF’s power over me, as we’d done for 23 years, wasn’t enough. We had to destroy it. I had my ravaged red lungs, corrupted by years of infection and inflammation, scraped from my chest and replaced with full-bodied pink lungs untouched by biowarfare. CF would remain a whipped dog in my digestive system, and transplant has its own risks. But CF was only ever lethal in my lungs. This would buy me a lot of time — “a very good lifespan.”

I just needed to wait for the call that lungs were available. My team waited for the same call. It was a call that would mean someone had died, “brain dead,” they call it. It might have been someone who didn’t know to fear death. Who hadn’t stared it in the eyes until then. Or it might have even been someone who embraced death for comfort from life’s woes. It was something I didn’t want to think about, but forced myself to. It was something very real and almost biblical: death for new life. I got the call, and I thought of my donor. And rarely have I stopped.

I always imagined the OR would be a grand opera of flying metal instruments and shouting. On Jan. 15, 2017, as I lay on the freezing operating table awaiting sedation, I snuck a peek at the surgery team: They were calm, collected. For them, this was another night on the job — they’re that cool. The surgery was likely conducted with murmured instructions and practiced precision, pierced by a moment of silence for my donor — as is tradition.

Before the surgery, it was, “No-nonsense, realize the gravity of the situation.” Since then, it’s been ohh’s and ahh’s with my transplant team because of a renewed life. One day, chaotic crisis can cut celebration. But, for now, I sleep deeply at night, knowing CF will not kill me.

(Click here to read about the two days leading up to my transplant surgery.)

Growing New Teeth

Turning nightmares into dreams.

I’m on University Ave. at my old college. I wiggle a top-front tooth back and forth between my forefinger and thumb. Then spit the tooth out onto my palm. No blood. Just a tooth. Then spit out the two surrounding that one. Two more drop out without spitting. Then two more. Two more. Then my bottom row of teeth. I try to keep half my teeth in my mouth but accidentally swallow them. The other half bounce onto my palm and then fall through my fingers, roll under bushes and into gutters. I try screaming for help but I’m choking on teeth stuck in my airpipe. I chomp my jaw together and gums touch gums. No teeth left.

And then I wake up. And know I’ll have the nightmare again in the next few sleeps.

It’s a nightmare I consistently had when I moved to Seattle for a year. When I got my first editor job. When I graduated from college. When I joined the lung transplant waiting list. And now.

Conveniently, there’s a whole site devoted to interpreting this nightmare. I don’t mean DreamDictionary.com (which, oddly, leads to a Dell Computer sales site). There’s an actual TeethFallingOutDream.org. Apparently, it’s not an uncommon nightmare. Here’s what they have to say about it:

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I guess it checks out. Well, no anxiety-inducing sexual experiences, but the rest is legit.

Kristina and I broke up a couple months ago, after six years of dating. It’s something I’ve accepted and I fully support her decision. She’s been with me her entire adult life, so a need for self-discovery makes total sense. Heck, I’ve been with her my entire adult life. So maybe it’s time I discover myself as well.

We’ve mostly made life plans through the lens of the other. And everything needed to be rushed when cystic fibrosis was jabbing its tendrils into every aspect of life. Now I’m finally healthy and things don’t seem so urgent anymore. And we aren’t as dependent on each other. You have the vows, “In sickness and in health,” right? Well, we tested the torrid torrents of sickness. But health, ironically, proved to be harder for the relationship.

So, we’ve accepted the split. She will stay in Hawaii, I will stay in California. We’re still friends.

But life’s revolution has been knocked off balance. Most plans make almost no sense now that we aren’t life partners. In short, life has changed big time. Plans need to be changed big time. So the teeth thing makes sense. I have new lungs, new hearing, new friends, I’m at a new-ish place, and I need a new job.

Honestly, it scares me.

Funnily enough, the cheaply-made teeth dream website made me feel better. I really liked the latter portion of the TeethFallingOutDream.org webpage. It listed brighter perspectives on the dream:

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The Jungian interpretation intrigues me most. “Times of renewal and ‘rebirth.'” Isn’t that what transplantation is all about? Through the tough experiences (what I call the “grindstone of life”), my character has only sharpened. For once in my life, I don’t have to compete quite as hard for a fair shot at opportunities. New lungs, new ears, new health, new endurance.

As cliche as it is, I can’t avoid thinking of a phoenix — burned to ash, reborn full and strong.

Did I seriously just use the phoenix comparison?

New teeth will grow in. This isn’t a weak point, it’s my strongest.

Celebrating victory with Princess Leia

Thank you, Leia, and thank you, Carrie — for helping me celebrate another milestone of victory.

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.

 

Freeing Myself from the Slavery of False Guilt

In 2012, my psychologist told me I suffer from an overactive conscience. It’s been spiritually crippling, but I’m ready to fight it.

“I was at an advanced showing for Monsters U and this girl, just the kindest girl, was behind my group in line. She had Down syndrome, I think. I asked her if she was excited and she told me she loved Monsters, Inc. This was the first time her parents let her go to an event on her own. I went into the movie, had a good time, then came out to find her standing by the curb at the parking lot. I asked how she liked the movie and she said she never saw it. That the line had cut off right after me — first come, first serve for the tickets. I had no idea. I hadn’t checked behind me when walking into the theater. She didn’t know how to contact her parents. She’d stood at the curb for two hours waiting for them to pick her up.”

It’s 2012, my freshman year of college in Seattle. My psychologist, a wizened man in his 80s (and wise as a wizard), leans his nearly-weightless weight onto a leather armrest that’s as creased as the creases between his eyebrows. He’s a forehead-creaser when he thinks hard. I like that about him.

“And you feel guilty. How guilty?”

“I barely slept the past couple nights and had three panic attacks. I can’t stop thinking about it. If I just turned around, I would have known she hadn’t gotten in. I would have given my ticket.”

“Panic about the past rather than apprehension for the future?”

“It feels like panic attacks. I just think about her face and cry.”

He leans forward, hands me a tissue, and pokes me in the knee. Stares into my face until he catches my eye.

“You can’t be mad at yourself for not turning your head. What other thoughts do you have during these attacks?”

“I think about her parents’ sadness when they realize their child’s first adventure was a failure. I think about kids from special ed in high school being bullied. I think about me not being their friend and helping them. I think about their parents’ sadness.”

“So the thought leads to a thought leads to a thought? And all guilt?”

“Yeah.” I blow my nose. Nothing gets cystic fibrosis sinuses running like salty tears do. The whole floral-patterned box of tissues is pressed into my hands.

“Guilt for things out of your control.”

“Maybe.”


I left the office with the words “overactive conscience” floating about in my conscience. More often called “false guilt,” it’s the idea that a person overthinks situations and places blame on themselves for things outside of their control. It’s commonly depicted in TV and movies as being tied in with post-traumatic stress disorder — survivor’s guilt.

False guilt is a cackling hyena, whispering discontent in my ear and shredding little pieces of my soul, bit by bit. My psychologist theorized it is the rotting root of my anxiety and panic disorders. 

It can be about small things: guilt for doing my job as an editor — criticizing people’s writing, though I know it will only grow their skills. For having to flake on plans with friends for medical emergencies.

It can be about big things: guilt that I (no, my disease, not me) forced my parents to drop their beloved jobs and move away from paradise. Guilt that I am living healthily while others with cystic fibrosis are still suffering. That every happy post I make is spitting on them. Guilt that I got new lungs while others on the waiting list died. Guilt for carrying the lungs of a dead man. (This is the part where I remind you that mental illness is not rational.)

Guilt that injects my sleep with nightmares. Guilt that makes my heart hammer so hard against my ribs that I hear it, even without my implants. Guilt that makes me question my identity, makes me question my purpose, makes me question my questions. Guilt that makes low blows to my joy.

Note: Amend all guilt to “false guilt.”

I deceived myself into thinking the guilt I had was a blessing, that it was used to force me to constantly try bettering myself. But there’s a difference between human guilt that is false and spiritual conviction. (There’s spiritual conviction that is God nudging you towards doing certain things. And there’s spiritual conviction that makes you confront your sins/misdeeds. The latter is what I’m writing about.)

Human guilt can be corrupted and passed off as humility, when it’s actually self-serving (it leads us to pursue what ‘makes us feel better’). False guilt is a form of that corruption. Spiritual conviction comes from God and ideally leads to remorse and action to seek forgiveness. When forgiven, the sin dies. When the sin dies, we live.

“Therefore, brothers and sisters, we have an obligation — but it is not to the flesh, to live according to it. For if you live according to the flesh, you will die; but if by the Spirit you put to death the misdeeds of the body, you will live.” – Romans 8:12-13

With these thoughts, I created a simple rubric for my guilt:

  1. Did I sin? (Did I disobey God?)
  2. Is this guilt keeping me from living as God wants me to?

If the answer is “yes” to either of these, there’s a problem. If it’s a “yes” to Question 1, I’ve sinned and should focus on remorse and forgiveness (which often requires action, not just words). This would also mean Question 2 is an automatic “yes,” until I’ve received forgiveness from God.

If Question 2 is a “yes,” and Question 1 is “no,” the guilt is false and is negatively affecting my heart. It should be dealt with before it festers and corrupts my mind by producing anxiety.

Check this out:

“For freedom Christ has set us free; stand firm therefore, and do not submit again to a yoke of slavery.” – Galatians 5:1

I view false guilt as a slavery. When I allow it to control my emotions and it is not from God, it is an idol and a master.

For my specific case — the false guilt produced by my transplant — I am learning to focus on God’s Will. If I truly believe it was His Plan for me to get a transplant, should I feel guilty for getting it? For taking joy in the fulfillment of a promise?If I didn’t sin by taking this transplant, why should I feel guilty? Would he have comforted me through this process in times of prayer if it wasn’t the process I was planned to undertake? 

“When anxiety was great within me, your consolation brought me joy.” – Psalm 94:19

Being transparent, I still have these feelings of false guilt even as I write this. I allow my anxieties to produce inaction when God is telling me, “Go.” But I am fighting back against this paralysis of spirit. God has given me new chances at life and I should be joyful.

“God has delivered me from going down to the pit,
   and I shall live to enjoy the light of life.’

‘God does all these things to a person—
   twice, even three times—

to turn them back from the pit,
that the light of life may shine on them.’”

– Job 33:28-30

The Vomiting Perspective

If I had to list my top three skills, it would be Star Wars debating, writing, and vomiting.

I’m a darn good vomiter. Nah, my head is stuck in the past. I’m not really good at it anymore.

But there were many years where I would vomit an average of four times every single day. Between the nauseating effects of medication, my lungs and stomach literally overflowing with thick mucus, and a vicious cough that gagged me… well, let’s just say CF isn’t ‘just’ a lung disease. It’s also a vomit disease (among many other things).

If you haven’t gotten the hint yet, this post doesn’t skirt around the nastiness of CF.

Anyway, I’d usually throw up at 7:30 a.m. while doing my morning treatments before school, then once during school or work after lunch time, then at 9 p.m. during my evening treatments, then 3 a.m. during my tube feedings. Most people would stay home if they vomited just once, but with CF you just kinda haveta accept that’s life and you still need to compete with all the “healthy people.” So I learned locations of public restrooms, I kept napkins and a toothbrush to clean up, I memorized which foods taste particularly nasty the second time, and the perfect angle to position my head and neck to avoid the vomit entering my lungs. And I got used to it. I could vomit and be back at taking my exams in a jiffy.

Now I’m gonna sidetrack so you understand why I’m revealing my vomit habits.

My feeding tube had a balloon that kept it secure in the stomach/intestine (so it doesn’t move around or fall out). About eleven days ago, the tube’s balloon burst. 14 inches of rubber was freely dangling about in my stomach while I scrambled to schedule an appointment to have it removed (frustratingly, I had to wait about nine days to get an appointment). I was in agonizing pain at times and having other stomach troubles. I even got so dehydrated I almost passed out in the middle of San Francisco! Thankfully, I got the tube removed an hour later (and it’s gone for good — after seven years of depending on it!).

Because of these troubles, I vomited. And I was not good at it. I moaned and yelled for my parents in the middle of the night. I don’t know what they could have done — I guess I just wanted someone to recognize my misery and pity me a bit. I’m a jerk when it’s 3 a.m. It just hurt so badly in my throat and nose. And ugh, so disgusting. Even after a few mouthwash rinses, I felt contaminated. How did I do this multiple times a day for years?

Today, after most symptoms cleared (and I lost six pounds), I hiked up some stairs to a summit in the Santa Cruz Mountains. The gorgeous views from those mountains always get me thinkin’.

The torturous vomiting was a daily, common reality during my CF days. It’s been about eight months since I’ve been that nauseous, so I guess I’ve just been spoiled since then. All around the world, there are others with CF and other conditions still living that reality.

I used to feel so frustrated when people would complain about their colds or flu when I was dealing with so many infections. It wasn’t until recent years that I realized that wasn’t fair of me — that we all have our perspectives. For someone who’s barely experienced sickness, ‘small’ germs will have an immense effect. For someone who’s battled huge diseases or cancer, a cold might seem ‘easy’ in comparison. That’s how built-up tolerance works.

I always thought nausea and vomiting was terrible, yes, but it was a normal occurrence for me. Once I’d gone several months without it happening, it was awful. I just wasn’t used to that kind of pain again. I thought, “Oh. So this is why healthy people hate vomiting so much.” It fuels my belief that we shouldn’t look down on others for those having suffering on different levels than us because of unshared life experiences.

Things like this humble me and make me realize how blessed I am to have put many aspects of CF behind me. And it makes me want to work even harder to help other people with CF. 

“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” – Romans 5:3-5