When Milk Faith Becomes a Feast

My transition from milk to food has been a thrilling one.

I gave you milk, not solid food, for you were not yet ready for it. Indeed, you are still not ready.

–1 Corinthians 3:2.

Thoughtful readers of Paul can’t help but wonder what food they’re missing out on. In the past, I read the verse and imagined a meager piece of bread. Now, though, it is a feast of the mind.

A too-smooth church upbringing.

For months, I wrestled with a ministry calling from God. It resulted in a desert of spiritual dissatisfaction and haunting questions. Alone and afraid, I sat up for nights wondering why I believe what I believe and thinking I can’t do ministry without answers.

A pitfall of growing up in the church is that the transition from childhood faith to adulthood faith can be a little too smooth; I accepted what I believed simply because it was all I knew. I scratched my head at teenaged church friends who doubted. Now I scratch my head at my past self for not questioning alongside them.

Recently, Mom reminded me that I was raised to think for myself. That’s true, but I didn’t apply critical thinking to my faith. I suppressed challenging questions because I didn’t want to lose my faith and feel out of place in my favorite community on earth — church.

An invitation to feast.

I didn’t really know God intimitely until I almost died in 2016. Other than that recent spiritual desert, I’ve since blown through life in His peace, my spirit experiencing Him in ways indescribable and overwhelming.

Like newborn babies, you must crave pure spiritual milk so that you will grow into a full experience of salvation. Cry out for this nourishment, now that you have had a taste of the Lord’s kindness.

1 Peter 2:2-3

For four years, I’ve craved more and more in my relationship with God. I’ve had a good idea of how Jesus wants me to live and I’ve been doing better at breaking sin patterns, but I realized I’ve only had elementary understanding of and faith in God — milk faith. I need to explore many questions if I am to mature in ministry. How do I teach if I have not learned wisdom?

Solid food is for those who are mature, who through training have the skill to recognize the difference between right and wrong.

Hebrews 5:14

The mind-heart connection was murky until recently. When mentoring youth, I performed mental aerobics to explain what I had no grasp of, without really realizing I was doing so. I had scripts with classic “Gotcha!” answers but those “answers” morphed into the questions that buzzed through my mind in my aforementioned spiritual desert.

When I was a kid, others would ask hard questions at church camp about genocide or atonement and the response would often be a shrug and the implication that “that’s just how it is.” That’s not feeding milk or food, it’s uncomfortable avoidance. I don’t want to do ministry that way.

So, I began “deconstructing” my faith, prayerfully picking apart each idea that feeds into my ideas of God’s character and the Christian walk. My intensive faith examination has led me to more intimate communion with Christ. Doubt, for me, became catalyst to matured, intensified faith. 

Reconstructing my Christianity.

Solid food manifested through the metaphysical first: Asking God to help me understand Him. He answered, restoring in me an intense, unquenchable desire to read the Bible.

I’d read the New Testament in autumn but I didn’t feel ready to touch the Old. My beloved prayer partner said she feels God wants to “personally mentor” me in discernment. That sounded pretty … cool … so I opened up ol’ Genesis. And I read and read and read, first in horror and then in beautiful realization.

If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.

James 1:5

During this time, I prayed for wisdom more than ever before, and I read analyses by linguists, and I studied anthropological articles, and I watched sermons by theologians of many views, and I listened to podcasts by Bible scholars, and I learned fancy words like Christus victor, and I practiced various methods of liturgy, and I examined how ancient Israelites and early church fathers read the Bible.

(I’ll take a break here to address people who have been wondering why I’ve disappeared from the face of the earth in the past months: I’ve been doing this!)

And I came to see the Bible as actually very, really exciting; in fact, it is the best book I’ve ever read. It’s also the most misunderstood and literarily complex book I’ve ever read.

I once received scripture as piece meal and through a modern-Western lens, but I am now seeing the greater narrative as something that must be read in its entirety.

I learned that contradicting verses are not questions begging justification aerobics but are instead invitations to wisdom-forming debate, that ancient idioms say one thing and mean another, that literary genre must be understood before interpreting a book, that linguists don’t always agree on translations, that ancient Israelite rhetoric is nothing like mine, that the Bible speaks in metaphor just as often as Jesus speaks in parables.

I learned that Jesus is the Word from the beginning, the ultimate teaching authority and lens through which to view the Old Testament. He corrected religious scholars’ interpretations, and would correct our interpretations, too.

I can’t get enough of this feast.

For months, I’ve been excitably digging through this feast and adding meat to my faith, praying for Christ to correct my discernment just as He guided many others who ate at His table. Sometimes, I find I simply cannot read a page or listen to a podcast. I can tell that what is being discussed is engaging, as is the language used, yet there’s a block on my mind preventing me from consuming the offered knowledge despite repeated attempts. Maybe my prayer partner was right and Abba really is mentoring me through this all.

I have found the courage to admit I don’t know many things and I have found the confidence to respond to questions once mystery to me. I have cast away some views and adopted others. At times, I’m afraid I will disappoint others with new views but other times I’ve found surprising solidarity. At times, I bemoan the divisions in the Church and other times I wipe away tears while reflecting on its unity.

I often hear the word “deconstruction” used negatively in church popular culture but I realize now that if I had never stripped down my faith and interrogated it, I could not have reconstructed it to be as beautiful as it is today.

Now, when mentored high schoolers tell me they’re doubting, I tell them I love that they admit that to me. I don’t want them to feel alone. I’m not happy they doubt, because it is a grueling and alienating experience. I know that because many “greats” — Job, Jeremiah, Abraham, others — in the Bible wrestled with God, too, and it tore at their hearts. But guess what? They left this earth even more intimate with Him.

It’s Time to Reboot

Sometimes a blog becomes a source of guilt. This beloved site that pulled me through the most difficult season of my life has now gathered (pixel) dust. I tried rebooting a few times, but I dunno… It’s time, though. As fulfilling as it has been to write my column at Cystic Fibrosis News Today, I need a space to discuss things unrelated to my disease, especially matters of spirituality. So…

***

It’s been a wild couple of years. I was promoted to head the columns division at BioNews Services, moved to Santa Cruz, became a church youth group volunteer, founded a chapter of the Lung Transplant Foundation, co-founded a disabilities ministry at church, helped to get a crowdfunding company off the ground, competed in the Transplant Games of America (and won two medals!), went on a couple of mission trips, and delivered a couple of sermons.

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Photo by Kathleen Sheffer Photography

I traveled to Serbia, Japan, Jordan, western and eastern Canada, Australia, Switzerland, Singapore, Germany, Hawaii, Colorado, New Mexico, Nevada, Utah, Georgia, Florida, North Carolina, New York, Pennsylvania, Rhode Island, Washington, Oregon, Massachusetts, Southern and Northern California. Up next is Malaysia, a return to Hawaii, then Tennessee.

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The locals were stoked to slap this bad boy on my head in Jordan.

Sounds great, huh? And it has been, really, on the surface level. I’m grateful to have a body capable of sprinting through all of this. But in all of that beautiful chaos, I lost many of the lessons I’d learned through my transplant and deafness experience. I read through old blog posts and realize some things unclicked in my brain.

That makes me sad.

I can gain earthly accomplishments and chase adventure adrenaline, but it’s really all meaningless in comparison to the inner peace and joy I once had. I viewed my “unbreakable joy” as something that could not be tampered by outside forces but I neglected to recognize I could dent it through my own choices. When I was weak, I flowed with the current; now with my newfound strength I fight it, try to rip control from it. Now, I love having the illusion of control over my life.

At times, I sort of miss actively dying.

I miss being forced to move slowly and take notice of all the beautiful things surrounding me. I miss when I didn’t care about material possessions or ambition. I miss when drama seemed harmless compared to matters of life and death. I miss living each day like it was my last.

I began this blog to chronicle what I learned as I died. I reboot my blog to chronicle what I learn as I try to restore my mindset of dying.

I am on a mission to dive deeper into God; to reestablish meekness and habits of Sabbath, to rediscover my passion for unceasing prayer and sacrifice without selfish thought. It’s a tough journey, and tough journeys are made better with accountability. The hope is that by being honest with readers, I will be kept on track. 67650057_10219331294777407_3448588752748806144_o.jpgFor the sake of accountability, I feel I must be transparent with you: I’ve embraced a life that has included gossip, deceit, guilt, occasional drunkenness, fluctuations of pride and self-loathing, lust, and rejection of Sabbath. Those patterns need to end.

This all isn’t to say this hasn’t been a season of great growth in my faith as well. I’ve learned plenty of life-charging lessons amid both the fun and awful, and I’m stoked to share them. It’s just that I’ve dropped lessons along the way, as though my tiny brain can only handle so much at once!

In this blog, I will write of the practical and philosophical lessons learned along the way while also confessing as I did above. This will involve peeks into my recent history as well as present-day accounts. I will share victories from God and doubts from me. I will share steps forward and backslides.

I’m excited for this next volume in my life journey.

“Create in me a pure heart, O God,
    and renew a steadfast spirit within me.
Do not cast me from your presence
    or take your Holy Spirit from me.
Restore to me the joy of your salvation
    and grant me a willing spirit, to sustain me.”
–Psalm 51:10-12

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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The Sudden Smooth

The worst year of my life led to the best of my life. I am adamant in my belief that faith was the catalyst for where I am today.

(The image above was taken by Kathleen Sheffer. The left was weeks after transplant. The right was taken during the “sudden smooth” a few days ago.)


There’s this song, Oceans, by Hillsong United, that’s about holding on for dear life to God in the midst of life’s storms. Go ahead and give it a listen at the link — this is a long post.

There’s this part, So I will call upon Your name / And keep my eyes above the waves / When oceans rise, my soul will rest in Your embrace / For I am Yours and You are mine.”

Ah, man. It gets me every time. I choke up (dangerous when you have a lung disease) and my eyes, ironically, get filled with waves of tears.

In elementary school, I got my foot stuck in a piece of coral while at Shark’s Cove in Oahu. Being a lil’ kid, I thought a place called Shark’s Cove, naturally, had sharks. It turns out that the biggest threat was actually the tide. I was anchored down by the coral and the tide was rising, rising, rising. Up to my nose, almost to my eyes. I screamed, “HELP, HELP, DON’T LET ME DROWN.” These tourists were mere ripples away from me, on plastic floaties. They stared at me. Just stared. Indifferent. My mom shrieked for help from the shore, and … I don’t really remember what happened next, honestly. I’m assuming I survived.

My whole life was me trying to keep my eyes above the waves. It was always survival; the seas were never calm. And yeah, at times, I felt like God had fallen asleep to my prayers, as Jesus did in the midst of the storm in Matthew 8:23-26:

“Then he got into the boat and his disciples followed him. Suddenly a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. The disciples went and woke him, saying, ‘Lord, save us! We’re going to drown!’ He replied, ‘You of little faith, why are you so afraid?’ Then he got up and rebuked the winds and the waves, and it was completely calm.”

The disciples put their shaky faith in sails and wood to keep them afloat in the storm. I put my faith in a “magic” blue pill (Kalydeco) that I believed would save me, as it saved so many others with cystic fibrosis. When it didn’t work, I was sucked into this storm. I feared for my life. My foot was stuck in the coral of CF and I was drowning in mucus and tears. Mom was on a metaphorical shore, praying for me to be helped as transplant centers refused to offer their life rafts.

The answer for the disciples was right below decks, not in the sails or the wood of the ship. When they woke Jesus, He said simply: “You of little faith, why are you so afraid?”

Two years ago, so deaf that I couldn’t hear my own words, I screamed in fear to God, “DO SOMETHING. DO SOMETHING. DON’T JUST WATCH ME. DON’T LET ME DROWN.” But it was an outraged prayer, not a faithful one. I wasn’t ready to join Him. I loved the world more than Him.

And then I almost died and, as you’ve read many times before in this blog, I had an epiphany. Unlike in the story in Matthew, He was awake all along. I was the one who needed to open eyes. I rested in God’s embrace as He whispered that I was little, but there was no need to be afraid. “I just want another chance, Father. Please, help me. I don’t want to hurt anymore.”

Little by little, my fear seeped away, until I was on that operating room table experiencing the calmest calm. A calm calmer than I thought possible. I finally grasped a faith that could break a sea in two.

This was the evanescent eye of the storm. The waves returned and crashed, crashed, crashed. I faced opioid withdrawal, grief, a breakup. But the torrent eroded the remaining strongholds of stubbornness around my heart. I was learning to give it all to God. To accept that my faith in God didn’t make me a lucky Irish who would never be affected by bad things again. Rather, my faith gives me the strength to sing the mantra, “when sorrows like sea billows roll, whatever my lot … it is well with my soul.”

I stood by the sea in San Luis Obispo a month ago. It was calm.

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The sea that day.

I stood with my uncle and remarked that, today, I breathe better than I have since I was a child. That I hear better than I have since 2010. I made the remarks and realized I hadn’t realized that until I made the remarks.

Jehovah Rapha (The Lord that Heals) heard me and delivered in ways I didn’t think possible. After a whole life of storms, I’m mesmerized by the “sudden smooth.”

On Saturday, I had a “Lungiversary” party to celebrate the year since my transplant. I went from a year of near-complete solitude to telling a friend at the party that I was relieved not everyone could show up because my house was too packed.

On Monday, I finished a day of work in which I cried four times. Once, because I edited a column that reminded me of how torturous a life with chronic illness is. Pain memory is a root of gratitude for a new life of relative health. The second time because a writer thanked me for helping them with getting evaluated for a lung transplant — my journey continues to positively affect others. The third time because I edited the column of a parent whose daughter asked him if he loves having a child who is disabled. (His answer: “I love you.”). The fourth time because my friend wrote a poignant column about our transplant journey together. The job is perfect for me, and was only obtained after months of applying for several other less-perfect jobs whose employers didn’t even bother to email or call me back. God closes doors to open better ones, yeah?

My breakup is now history, and a valuable friendship with her remains. We both have gratitude for our past relationship because it was six years of only ever building each other up. I know God has someone perfect in mind for the both of us.

My health continues to be excellent. I haven’t had organ rejection or major infections. I am rock climbing and muscle training. In San Luis Obispo, I rode an ATV over dunes and a horse up a gorgeous mountain.

 

My hearing is better than I hoped for. It takes many people years to enjoy music with cochlear implants, but it all sounds completely normal to me. My audiologist is even enrolling me in a study about how cochlear implants perceive music! My dad gets annoyed because he tries talking to me without realizing I’m jamming to music (it streams directly to my brain via Bluetooth). I ask if he’d rather that I listen to lots of music or be deaf. He concedes.

If you study the Bible, you’ll know that Peter, despite seeing Jesus calm the stormy seas, eventually forgot His greatness — for a while, at least. He declined even knowing Jesus three times in a single night. I don’t ever want to forget what God did for me. I want to live like the man in Job 33:19-33 who is saved from the grave and has his body restored to youthfulness, then spends the rest of his days praising God for healing him.

God already made me healthier than I have been since my youth. Life is melodious, radiant, technicolor now. What I do with the rest of my days is my decision. I think I will choose well.

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My cousin, Jeremy Wells, made this for me. The background is Job 33.

 

Becoming Captain America

This is Part Two of my New Years Resolution. Although it’s more about the rest of my life rather than 2018.

Much of the time spent with my group of friends in elementary school revolved around running. Pretending we were on flying broomsticks, that we were in Sonic the Hedgehog’s world, that we were spies or ninjas. To be the coolest kid in school, you had to play a mean game of tag. I was the fastest kid, I swear it. All my friends would deny it, but I swear it.

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Me in 2012, 110 lb.

Of course, I wasn’t fast enough to outrun my disease. A wrench was thrown into my engine, or rather bacteria were breathed into my lungs. By middle school, my lungs were exhausted just a few steps into running, far before my leg muscles were strained. Have you ever tried working out with the flu or pneumonia? It was like that for most of my life. I don’t remember not having multiple major lung infections before my transplant. By high school, I was always last in the pack during gym class jogs. Walking.

In time, my small, youthful muscles wasted away along with any excess fat. I used to joke that I was a “walking twig.” If you know me well, you’ve probably noticed I use self-deprecating humor to cover my insecurities.

When I was undergoing the lung transplant evaluation, my social worker asked what my goals were post-transplant. I said I’d like to run again and mountain bike. My mom burst into tears.

I used the same self-deprecating, deflective humor with my family. I always came up with lame excuses to not go on hikes or do sports. Realistically, it wasn’t so much laziness as it was that I hated with every fiber of my being to be reminded of the limitations of my disease. Huddling over on a hike or mountain bike ride to cough my brains out, when I once climbed uphill without difficulty, was a stark reminder that I was dying. Many with cystic fibrosis push through that and defy their disease to become fit. I admittedly didn’t have the same mental endurance as they do. I gave up on my fitness.

So, my mom cried that day and said she had no idea I wanted to do those kinds of things. I tapped my legs in nervousness, flaps of skin on my legs jiggling like jello, where my muscles once were.

I got the transplant 11 months ago. And I’ve run a lot — to cafes, to grocery stores, around the neighborhood. I’m making small gains each time. My longest run so far was 1.5 miles. That might not be much in your eyes, but it’s a far cry from my slow march with oxygen tanks in tow.

25531862_10214673789542687_8940292069743692081_oWhen I had the surgery, my sternum was broken to fit the new lungs in. Between my sternum now being held together by wire and my bones being thinned by steroids, I’ve surrendered to the idea that mountain biking might not be the best idea. But I’ve taken up rock climbing and, man, that makes me feel alive. Pre-transplant Brad was too afraid to try things involving heights. But I’ve been through enough that I’ve been conditioned to leap into action in the face of fear. Yes Man-style. As my dad’s military buddies would say, “Hooah!”

I’ve caught the adventure bug. I need to be fit for those adventures. If Captain America went from being an asthmatic twig to a fit, fearless adventurer, I can too. Minus the supersoldier serum injections, ’cause that looked painful. I’ve been muscle training for about three weeks now without skipping any sessions. I want to be fit enough to endure my upcoming adventures without much struggle.

2017 was my year. I got the transplant, got cochlear implants, and reversed my kidney disease. I also got a new job and have been making plenty of friends. (I’ll talk about that stuff more in my next post.)

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But there were also many losses. I have a belt of notches representing mostly failures and a handful of [major] successes from the past year and a half. In 2018, I’m throwing that belt out for a fresh start. I’m hoping the new belt will mostly be notched with successes.

Here are some highlights from 2017!

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I have a “De-Bucket List” that was inspired by the past year. These likely won’t all be accomplished in 2018, but I’m gonna hit as many as I can.

  1. Learn to ride a horse.
  2. Boulder outside of a climbing gym.
  3. Run a 3k race. Then a 5k.
  4. Ski or snowboard.
  5. Try surfing again.
  6. Ride rollercoasters.
  7. Hike at least once every couple weeks.
  8. Visit Hawaii and do hikes that intimidated me.
  9. Go on a trip outside of California with (a) friend(s).
  10. Travel out of the country.
  11. Successfully set up the NorCal chapter of The Lung Transplant Foundation.
  12. Get more involved with the Cystic Fibrosis Foundation.
  13. Mentor a transplant patient.
  14. Join a ministry at church.
  15. Get my driver’s license (at long last).
  16. Move out of my parents’ house.
  17. Perfectly cook something extremely complicated.
  18. Finish my memoir.
  19. Feel good about my body: reach 140 pounds via a healthy diet and muscle training.
  20. Get to 100% FEV1 (lung function).

Happy 2018! Hope your holidays of choice were merry!

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.

Savoring Stress

Stresses then, stresses now. A little perspective to ease my mind.

I spent an entire hour stressing about which coffee shop to write at. I checked Yelp, checked bus time tables, made a bunch of sighing and “ugh” noises, wondered what my priority was: food, coffee, or atmosphere?

I got to the coffee shop and stressed about how my column wasn’t turning out as I’d imagined it would. The writing was clunky and unimaginative.

I transitioned to searching for jobs and stressed over how my qualifications weren’t good enough for the unreasonably high standards of Silicon Valley.

I checked out the average rent for apartments in the Valley and San Francisco and stressed over how I’d probably need to sell my kidney to afford living here (as if I haven’t lost enough organs — just take them all!).

I then stressed about how long it’s been since I had a fun adventure. I began planning for new ones.

But then I stopped and reflected on my experiences. And chose to savor these stresses.

Because last year, November 2016,

I stressed about not having a social life because of my deafness.

I stressed about being on the waiting list for a transplant because there was a good statistical chance I wouldn’t survive before I got a lung offer.

I stressed about dying while deaf and being unable to hear those at my bedside.

I stressed about choking in my sleep on great globs of mucus that filled my lungs overnight.

I stressed about diabetes and constant vomiting and IV drug side effects and the return of antibiotic-resistant superbugs that would make transplant impossible.

I stressed about not being able to begin my career to leave a mark on the world.

I stressed about how difficult and torturous recovery from transplant would be if I got the surgery.

Dread was the worst side effect of my cystic fibrosis.


Today, I stressed about normal-people things. Finding a job and being great at it, finding shelter, finding good coffee. Those problems are hard and real (especially the coffee part!). But I’m alive and my medical worries are at the back of my mind, in a cabinet collecting dust.

It feels darn good.


(Photo by Kathleen Sheffer!)

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.”

giphy

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.

 

Some things are bad, but many things are good.

A cheery update on how things are going, to make up for the last dreary post.

Howdy again. My last post was rather dreary, so I owe you all an upper in the form of a life update.

How’s the heart?

First off, a big thank you to those who commented and messaged support on here and my Facebook. You confirmed I made the right choice in being open about my struggles. Things have gotten a hundred times worse for a reason I’ll keep to myself for now, but I have begun looking into therapy. There’s a Christian therapy group just a mile away from home, so maybe them if they accept my insurance. I will get through this.

“Where there is no guidance the people fall, But in abundance of counselors there is victory.” -Proverbs 11:14

How’s that hearing?

It’s better than I expected it to be! I’ve heard people say their implants started sounding natural after months of using them, but I think it all sounds natural already. Voices are sometimes too soft and some music is still a big miss, but those are things that will get better with more tuning up and practice. I’ve had one tuning (“mapping”) session so far and it helped a lot with making sounds more full-bodied. My audiologist told me to give her my report quietly because she didn’t want other implant users in the clinic to get jealous that I’m already loving music. That usually takes several months or never happens for many.

One big change since my last mapping is worship music sounds normal again. I’m probably annoying my neighbors with all my singing! But the singing really helps with the whole grief thing, so I ain’t gonna stop.

“My heart, O God, is steadfast, my heart is steadfast; I will sing and make music.” -Psalm 57:7

How’re the lungs?

“Beautiful,” “excellent,” and “perfect” are words my transplant doctor used during my Thursday transplant appointment. My lung function hasn’t changed, but that’s fine since they’re already as strong as a healthy person’s, statistically. No organ rejection! I also get to cut down on my steroid dose by half. I should be a lot less moody and get better sleep because of that.

My doc showed me my CT scans (really fancy x-rays) from 2015 and about three months ago. Seeing them next to each other was a jaw-dropper. My lungs in 2015 had these massive black holes — cavities. You could also see all the netted scarring and mucus plugs. It was appalling. And that was before my lungs started failing in 2016. I never posted them on my blog before, but I actually have pics of my old and new lungs. Click these words to visit a Flickr page with the pics. Don’t worry, it’s only pics of the organs in buckets. No surgery pictures!

“It’s Your breath in our lungs so we pour out our praise.” – All Sons & Daughters

How’re the kidneys and weight?

The kidneys are still in rough shape but they’re not getting worse. It turns out my blood testing lab may have been making my kidneys worse by measuring my medication levels incorrectly (which leads to me being overdosed by transplant meds that are very hard on the kidneys). Maybe there’s hope for my kidneys if we sort out the lab problem…

My weight has been pretty consistent! It’s been about 3.5 months since I did my feeding tube. Wow. I really doubted I would ever be able to keep on all my weight by just eating. Remember, those with cystic fibrosis need double the calories and fat needs of a normal person. It’s hard!

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?” -Matthew 6:25

What about fun?

Plenty of it! Been going on hikes with the parents, chillin’ with a friend who went to Mililani High (my old school), and going to church twice a week! Check out my slideshow below.

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“So I commend the enjoyment of life, because there is nothing better for a person under the sun than to eat and drink and be glad. Then joy will accompany them in their toil all the days of the life God has given them under the sun.” -Ecclesiastes 8:15