Tag: CF

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…

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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

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.

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.

 

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.)

On Commonality and Invincibility

We all breathed heavily. Some, a shallow heavy. Others, a deep heavy.

We all breathed heavily.

Some, because shallow breaths didn’t cut it anymore, courtesy of advanced lung conditions: ideopathic pulmonary fibrosis, cystic fibrosis, pulmonary hypertension, chronic obstructive pulmonary disorder. Diseases with enough syllables to leave anyone gasping.

Others, simply because we could. Because we’d spent decades or years or months in a slow-burn suffocation. But someone else died and so we lived. We breathe deep breaths of gratitude.

An assemblage of pre- and post-transplant patients from Stanford Medical — except me. Many have vertical incision scars (marks of Stanford) poking out from the collar of their shirts. The horizontal symbol of UCSF Medical, shimmery purple scar from pit to pit, is hidden beneath my flannel.

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A couple patients’ incisions are not yet scars — they have the telltale signs of weeks-fresh surgery. Eyes wide despite the bags sagging them down, legs frantically tapping out Morse code.

“They’re still drugged up,” I type out on my phone and show Kathleen beside me.

I remember the feeling. That I was invincible and life could be nothing less sweet than peaches and cream from thereon.

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Me, five days post-surgery: “This honestly isn't as hard as I expected. Kind of easy.”

Nurse, filling a syringe with heparin: “Patients often say that. At first.”

And then the fentanyl withdrawals hit me. Kathleen once wrote that she doesn’t congratulate people on their transplants. That she knows they still have a long way to go.

We’d met at a coffee shop in Haight-Ashbury a few days after I left the hospital in February. We’d first started talking when I commented on her blog a few months before. She got her heart-lung transplant after kicking back at pulmonary hypertension most of her life.

Kathleen typed on her phone about the difficulty ahead and I (still deaf at the time) tried to act chill about it. Act like I had a mind wrapped in iron defenses, no problems with my recovery. Around 3 a.m. that night, I swaddled my feeble body in thick blankets and sobbed. Gazed with heartbreak at the bottle of oxy. Recalled all the news stories about middle-class white men getting hooked on opioid painlifekillers.

Days later, Kathleen took me on my first “hike” post-transplant. My legs had bundles of lead strapped to them, I swear it. But we made it a good way up. The San Franciscan Victorian-style apartments below looked noticeably smaller and that was good enough for me. She told me we would only climb higher later on.

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Kathleen was right. Recovery was tough. And I now realize her withholding of congratulations was partly what allowed me to open up to her later about my struggles. I was fearful of people thinking I took the gift of new lungs for granted if I complained. I’d already had people imply I shouldn’t be anything but happy after getting such a blessing.

But Kathleen only ever gave me the straight-up. She understood that transplanted organs come at terrible prices: love affairs with opioids, crises of identity, and tear-blood-sweat-stained sheets.

And so we talked about death and psychosis and fear of dreaming. We talked about what others simply didn’t want to (or couldn’t). And we breathed heavily with each other on our hikes.

We are surrounded at Stanford Medical by many who take the same pills at 9 a.m. and 9 p.m. sharp. Who wear masks to protect fragile immune systems. Who don’t eat sushi or rare steak or pomegranate.

All of us, breathing heavily. Deeply and beautifully.

Two weeks later, I spent time with Kathleen again. We climbed 70 floors’ worth of height to reach the tip-top of Tank Hill. I gazed at UCSF below me, at the cotton candy-colored sky evaporating into dusk. Kathleen had said those many months ago on our first hike that there would be more to come. That it would only get easier. As usual, she was correct.

The next day, we'd meet other heart and lung transplant patients for a photo shoot of our scars. Days later, we'd learn prominent figures in the transplant community passed away. Kathleen would make me swear to live forever. I swore it, but we now both know exactly what we signed up for when we accepted those organic gifts. Like she said almost a year ago, it's a rough journey.

But atop Tank Hill, in that ethereal yet ephemeral atmosphere, I did feel invincible again (sans painkillers).

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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

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

An Anniversary of Writing to You

Thoughts on writing and why I do it.

It’s always been easy for me to write. I don’t mean to say I write gracefully or whatever. And that’s evident in just the last couple sentences. Rather, I write quickly and I’m able to get my point across easily. One of my high school English teachers used to call me “Not-Bad-Brad” because my work had potential, but I never quite went the extra mile.

I used to get angry with myself because my words never came out all pretty. I’d sit with a thesaurus and spend time just memorizing synonyms, read through the best of essays and try to get a feel for their cadence (I got that word from a thesaurus in tenth grade). But each time I’d implement styles and words that weren’t “me,” it was like welding butterfly doors on a Honda Civic. It was “try-hard.” It’s been really stinkin’ difficult to work for a smart magazine like FLUX or call myself “a writer” when I don’t even really like my writing.

In fifth grade, I got to join a program: “Red Hot Writing Club.” You could only be a part of it if you got A’s on all your essays or something. Dude, the pride I felt. Told myself I’d become an author one day. I wrote stories about getting lost in the mountains for days and surviving with just my bike and stories about being hired as a secret spy by the British government. Just lies I’d try to pass off as non-fiction (I’m sure I totally convinced my teacher).

In college, I tried to make an honest living (harhar, pun) by telling other people’s stories. I enjoyed journalism because I liked that simple language is encouraged, that I got an excuse to talk to new people, and that it was not about me. I didn’t see anything of value in my own experiences. I wasn’t creating businesses or saving people or having crazy adventures. I was just living.

In my junior year, I got offered to blog with HuffPost. My college newspaper advisor, Jay, is a walking fortune cookie, so I always interrupted his lunch to ask for advice. This time, “What do I have to offer with a blog? I’m a journalist, not a writer.” Jay looked at me and said a journalist is a writer. Real-as-my-fifth-grade-essays‘ dialogue:

Jay-Hagrid: “You’re a writer, Bradley.
Me: “I’m- I’m a wha-?”
Jay-Hagrid: “A writer.”
Me: “No, you’ve made a mistake. I can’t be.. a-a writer. I mean, I’m just.. Bradley. Just Bradley.”

Okay, I stole that dialogue from Harry Potter, but it was pretty similar. He told me that, one, I’m a writer. And, two, I’m not stale (not “just Bradley“). I have unique life experiences worth talking about. I just wasn’t ready at that point to be open about those experiences, though, and turned down the blog offer.

A year later, I took a class called “Autobiographical Writing About Illness.” I met up with the professor, Paul, to ask what the ethics were when it came to writing dialogue you can’t remember word-for-word (I know, the above dialogue is ironic). We ended up chatting for a long while. I’d written just one essay for the class but told him more of my story during that discussion. Paul is the golden type of professor that makes you feel valuable, that you’re not just another face in class. He told me he thought my story was worth something and that I need to keep writing. It’s one thing to hear that from a friend, another from your professor.

Our class read an essay by Virginia Woolf, “On Being Ill,” which questions why sickness isn’t treated as seriously in the literary world as love, jealousy, and battle. To me, the answer was easy: Sickness is depressing and talking about it seems only to be a fish for pity. (But I guess you could say the same about jealousy and heartbreak?)

I first got the pity idea from a friend whom I got into an argument with in sophomore year of high school. I honestly can’t remember what even started the argument, but the words that ended it cut deep enough that I can quote it word-for-word without worrying about the ethics I approached Paul about: “You pretend your disease is a lot more difficult than it is because you can’t stand to not be the center of attention.” I didn’t think that was 100% true, but it hurt enough to echo in my mind anytime I felt the desire to open up about my illness.

Jay and Paul’s encouragement clashed with this insecurity. But the semester I took the illness writing class was the same that I lost my hearing and found out transplant was to be considered. My writing became therapy. It didn’t need to be “good,” it just needed to be real. I didn’t realize how much I had to say about my illness. And I don’t mean just dark feelings. The positive stuff, too.

Fellow transplantee Kathleen’s mom said she thinks I drink “happy juice.” I do tend to see things more positively, but I never really thought of “why.” When my thoughts leaked onto the paper (that sounds more poetic than “onto a Google Doc”), it caused me to assess them in a way I usually can’t when they’re just floating around in my brainspace. I was finally analyzing the ingredients of my “happy juice,” allowing me to tweak them for better results.

When living in a disease community filled with so much heartbreak, how could I not share what makes me feel better? God, psychology tricks, perspectives, testimonies, love… writing. I finally found reasons to write about sickness that aren’t for pity-seeking — and I don’t believe all illness writing is, that was just what I was afraid others would think of me. Kristina encouraged me to create a blog and on Sept. 4, 2016, Adamantium Joy was created. Last month, I began my weekly CF column, “Victorious.” 

Jay and Paul were right all along: There has been much to say, and there is much more to say later. I’ve come to realize that writing is not just about elegance. I’ve found purpose in my writing and if I can help just one person, it’s all worth it. I have so much gratitude for those who have supported me. I have regular readers from the US, Latvia, Canada, UK, Spain, Germany, Japan, and dozens more. In a time where I often have felt alone and detached from the world, you’ve all reminded me that people out there really care and want to connect. It’s been a crazy year, thanks for riding it out with me.

Feeling normal is abnormal and I dig it

I was sitting and watching tv when I realized I hadn’t thought about breathing in hours. Maybe not even since yesterday.

I don’t know how much the average person thinks about breathing. It’s an action that’s taken focus for many years now.

Before I got home from my trip, I hadn’t weighed myself in two weeks. And I never once got anxious about my weight or obsessed over how much I was eating. I was just eating. And enjoying eating. It wasn’t a chore.

Before, I weighed myself three or four times a day, praying I’d spontaneously gain several pounds between each weighing session. I was logging my calories everyday and melting down if I fell short or couldn’t figure out the exact calorie count for a food. I loved the idea of food but hated needing to consume it out of obligation to my CF needs.

I finally stepped on the scale and I saw a number that was bigger than before the trip. I’ve been eating all day just because I want to.

I feel normal. Not normal for me. I’ve never felt normal until now. Rather, I feel like how I imagine feeling normal should feel.

During my two-week trip, I felt even better than normal. I felt adventurous.

Recap Time!

There was a sandstorm right after we landed in Phoenix. Then, I met with my first friend from high school and her husband. We explored a really rad old mining town.IMG_4697Later, I shot some guns in Flagstaff, Arizona for the heck of it.IMG_4778Then, I trekked through Antelope Canyon — magnificence. I did this with church group friends I left behind in Hawaii but who have stuck with me in the spirit of support.IMG_4924Then, we went to Horseshoe Bend — I stayed away from the edge because I fought too hard for this life to risk falling! SAMSUNG CAMERA PICTURESThen, we went to a fantastic collegiate ministry conference in Glorieta, New Mexico for a few days. I learned so many complex, eye-opening things about God. Big thanks to Kristina for transcribing.IMG_4996Then, I met with my first friend from Hawaii and ventured all around Santa Fe with him.IMG_5033Then, I saw my sister for the first time since transplant. Then, we met my cousin Tammy who was wonderful — and I forgot to take a picture with her!98F6D5D8-44FC-4FFB-94F0-7BB542D22EE7Then, we explored Denver. IMG_5348Then, I met with my first friend from Tennessee and shared childhood memories over the best ramen I’ve ever had.IMG_5082Then, I met Shelby’s boyfriend Greg, who turned out to be a really rad guy — I approve. 20767969_10213612758257568_2817002159544835128_nThen, Kristina left for Hawaii, which was sad, but I’m sure she’ll have a great semester. IMG_5054Then, we drove up into the awe-inspiring Rocky Mountains and I climbed stairs about 200 feet to reach 12,000-foot altitude. I hyperventilated up there (note the sign in the picture) while getting barraged by hail in intense wind. It was spectacular.IMG_5153Then, we explored Colorado Springs. Then, I came home.

Once back, my dad went in for surgery to fix his snapped collarbone (mountain biking crash). I’m not used to being the one in the surgery waiting room. And I’m definitely not used to my dad being on O2 (protocol) and me being hose-free! I can only poke fun at him because he’s doing totally fine.IMG_5386

I’m not exhausted at all. I wish the trip continued across America or even into other countries. I spent a lifetime on couches and at desks. I think I have a lot of catching up to do.

Next up: My best friend Josh is visiting from Hawaii for a week! Excited to play tour guide around the Bay.