We Made It! We’re Making It!

This blog won’t be so grand, ’cause I’m typing it hurriedly on my phone before embarking on another day of great adventure! Please excuse the rambling, disorganized nature of this post. But I figured the blog needing updating in light of all that has happened since my last post.

Got to San Francisco safely after riding in a dope jet that’s “like a G6.” I got to fly in this private jet because I needed huge amounts of oxygen to make sure my lungs wouldn’t implode or something at the high altitudes.

There are two big “aspects” of my trip I’ll update ya’ on, so you can just skip to whatever you’re interested in: the hospital-side of things and the vacation-side of things.

The Hospital-Side:

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So far, so good. Had three long days of appointments in which we met with transplant docs, CF docs, and an infectious disease doc. Long story short, they THINK I am eligible for the transplant list. But it’s not certain yet. We still have (painful) tests to undergo. There are some barriers I will have to overcome in terms of current infections I’m battling, but fingers are crossed and hearts are optimistic.

If I am put on the list, it could take an average of 3-6 months to get the transplant. If I get accepted on the list, I’ll write a more detailed post explaining the process.

Health-wise, I feel so amazing. The humidity in Hawaii really bogged me down, plus I’m trying out some new treatments. Two big changes: appetite and energy. I haven’t had a good appetite without the help of steroid meds for months, but I’m finally eating some now! Not sure if it’s because I’m surrounded by so much great food, or if it’s because of generally better health.

My energy boost has been astounding. In Hawaii, I only went outside the house for 4-5 hours, and spent most of that time sitting down in the theaters or at coffee shops. According to my FitBit, I was only averaging 600 steps a day. Even just talking to people made me tired, and I would need gasps of oxygen between bites of what little food I ate. Now, I’m energetic, on less oxygen, and out of the hotel nearly all day. Just yesterday, I hit 6,200 steps! So I guess you could say I’m doing 10x better now? Let’s hope this health climb continues.

The Vacation-Side:

 

Kristina is here with me for the first week (she leaves tomorrow :c ), so we are trying to play tourist. It also helps to keep my mind off the scary transplant stuff. We visited the Walt Disney Museum, the Aquarium of the Bay, explored Haight-Ashbury a little bit, roamed Fisherman’s Wharf and Golden Gate Park, and today we will be seeing what Mission District has to offer.

Of course, we also ate a lot of yummy food, from Chick-Fil-A to loads of chowder to Cuban food. I’m gonna miss the local food scene in Hawaii, but the Bay doesn’t seem half-bad when it comes to the taste buds.

Actually, the Bay isn’t half-bad at all. I think I will love living around here. I noticed there’s loads of disabilities accessibility, nerds to blend in with, diverse culture, and beautiful, comfortable climate (I love fog). We will probably be living in a city an hour or so outside of San Francisco (Gilroy or Sunnyvale), but it’s still cool to have nearby.

I miss everyone! But don’t worry about me. I’m doing better than fine.

P.S. I’ll getcha a better blog post ASAP!

A Hui Hou

After three months of planning, my family will finally be boarding the flight to San Francisco at midnight. I’m excited to have a change of scenery and to spend the first week there with Kristina. But I know the moment the wheels leave that runway, my heart is going to drop.

Four years ago, I couldn’t wait to leave Hawaii! I was on my way to Seattle for my freshman year of college and away from “island fever.” But I returned the next year, and began to call the island “home.” I’m gonna miss the sunny drives along the coast of North Shore, the slightly-scary nightlife of Chinatown, the slowness of Mililani suburbs, and even the tourist traps in Waikiki. I’m gonna miss Pidgin and the abundance of Spam musubi. I might even feel nostalgic about those long, dreadful rides on The Bus. Maybe not.

Everything I’ve been doing the past week has me thinking, “Man, this might be the last time I ______.” Just last night, Kristina and I felt pretty down as we left her house for what might be the last time. But Kristina, as usual, shared wisdom that made me feel loads better. She said we shouldn’t be focusing on the “lasts” but on the “firsts.” San Francisco will be filled with a bajlillion firsts, and could be home to exciting new loves. Dude, I’m stoked! Let’s be real, my “go-to-the-same-coffee-shops-everyday” schedule is getting old. It’s time to explore a new city and new life. I’m pretty nervous about meeting new friends thanks to my deafness, but it can be done!

I’m going to miss every one loads.

Tripler CF Team

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You are literally lifesavers. Thank you for always going above and beyond your job descriptions. You are more than my medical staff, you’re my friends. From giving me gifts to visiting me on your days off to crying alongside me, you’ve all been brilliant people.

Mentors

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Teachers, professors, and advisers have poured so much care into my life. It’s because of you that I learned to write decently, research aggressively, and work professionally. I’ve been so lucky to have mentors like you.

Ka Leo Dudes

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We bled sweat and tears together. Thank you for being patient with me as I learned what it takes to be a leader, and for leading me when I needed it. Ka Leo is where I “grew up.”

BCM

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I’ve never met a more loving group of peers. I made more friends my first night at Vine than I did any other day of my life. You are all so welcoming and genuinely caring. Please take care of Kristina while I’m not around!

The Gathering

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My second family. You’ve all sacrificed so much for me, and were always the first to visit me when I was hospitalized. I am still often shocked by how giving you all are. I will miss our potlucks and Bible studies. But I know I will see many of you again.

My Best Friend

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Dude, Josh, I’m gonna cry. I love you. I still remember the night I met you, I randomly told my sister I knew you would one day be my best friend. You’re more. You’re my brother.

Silent Satisfaction

Yesterday marked a pretty big milestone for my deafness. I’ve been “legally deaf” since April. The audiologists don’t really know what caused it, but they labeled it as Sudden Hearing Loss. For a month, a hearing aid worked a bit and I could understand maybe 50% of what people said. Then I became unable to understand speech at all. But I could still hear voices, hear myself, hear movies in the theater thanks to the huge speakers.

As of yesterday, the only things I can hear are the rumbling of cars and the deepest bass in music. I knew this time would come, but I can’t quite get my head around not even being able to hear my own voice or coughing. It’s not completely silent. Instead, there’s this deafening (excuse the pun) ringing in both my ears, changing its screeching tone every few minutes. The ringing (called tinnitus) is almost as bad as the deafness. But at the same time, it’s comforting to hear something.

Sometimes, I just want to scream, “Why me?!? I already have this disease to deal with, now you stack on deafness?” And honestly, I have moaned and whined those words in the most frustrating, self-pitying parts of the past few months. “Why couldn’t the deafness strike after my lung transplant? I need the social support the most right now.” “Why couldn’t it strike long before? When I was still physically strong?” It’s all just so… unfortunate.

But if you’ve kept up with my blog until now, you know I don’t accept the negative perspective. When I really think about it, I’m incredibly fortunate in many ways.

  1. Maybe “strike” isn’t the right word.

Sudden Hearing Loss is something that can be, well, sudden. While I definitely felt the hearing loss overnight in April, at least I didn’t lose it all at once. The hearing left bit by bit, allowing me to adjust along with it. Thanks to hearing aids, I was able to “set my affairs in order” and enjoy what I knew would be my last full spoken conversations with people for awhile. I also knew I would have to cherish and memorize the sounds I love most before they were lost to me: music, Kristina’s voice, birds chirping, and cooking noises. I had time. If it all happened overnight, I don’t think I would have adjusted as well.

  1. Y’all are too kind!

I have the best support group I could ask for. I have a girlfriend who loves and likes me no matter the intensity of my disabilities, parents who are so sacrificial and perfect, a church family that understands and genuinely cares, and friends who help me laugh at my situation. I may be a bit of a hermit these days, but I’m glad my days of extroversion resulted in so many beautiful relationships!

  1. Thank goodness I live in modern times.

There’s a lot of work to be done for disability accessibility in society, but a lot of work has already been done. It’s so great to have speech-to-text devices, texting, and closed captioning. Does anything more need to be said? There’s another cool piece of technology, which brings me to:

  1. A possibility for a “heard” future.

There are these really cool things called cochlear implants, which kinda allow sound to bypass the ears and, shamwow, let deaf people hear. I was actually supposed to get cochlear implants back in June, but the progression of my disease made surgery too risky to consider. However, a CF doctor in San Francisco that’s on my transplant team floated the idea of getting the implants at the same time as my lung transplant. Wouldn’t that be a life-changing day? It just so happens that his son has cochlear implants, so he’s rooting for me.

All this is not to say that it’s easy. I don’t want to deceive people into thinking deafness is easy, because that would be so disrespectful to the many others that are suffering from it. But it would be so much harder if I was deaf in 1850 BC or didn’t have support groups or the complete deafness struck overnight. Knowing that I might have my hearing restored through cochlear implants makes me think, “Hey, maybe this is a time that I need to:

  1. Learn to focus on what people are saying and not just think about what I’m going to say next. So, ironically, learn to listen.
  2. Learn patience. Being deaf is boring, and I want the implants now!
  3. Learn to be more observant. If the ears don’t work, the eyes do double work!
  4. Time to crack open a book.

Anywho. Thursday is my last doctor appointment at Tripler. Should be bittersweet. Until next time! And don’t forget to be extra grateful for your hearing today (:

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Oh yeah, it also gives me a lot of new joke material!

Perspective Sits in Places

On Tuesday, I went to the doc’s for a little procedure to replace my G-J tube (see bottom of post for explanation). The surgery was not the scary part. What really got my palms sweating, breathing straining, and mind racing was the five minutes spent in the ICU before heading to the procedure room. The spot we stood on was the same spot I would struggle to reach back when I was learning to walk again. As I mentioned in my last post, the days spent in that ward didn’t produce the fondest memories. Peeking into the room I had stayed, I started remembering things much too vividly.

I’ve been experiencing flashbacks since I was discharged from the hospital. I read that it’s pretty common for ICU patients to have PTSD so I guess that’s what you could label it. Probably the worst I ever felt it was when my dad came behind me and grabbed my shoulder to get my attention. All of a sudden, I flashed back to being held down in my hospital bed, hands grabbing my shoulders. When I was suffering from delusions and hallucinations in the ICU, I had tried tearing out my IVs and taking off my oxygen mask, so they had to strap my arms to the bed for a couple days. Despite the fogginess of my memory, I can safely say that was literally the worst thing I’ve ever gone through in my life. Stab me with needles, cut me open, give me terrible antibiotics — I can handle it. But I pray I never have to be strapped down again and forced to feel powerless in such a frightful time.

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Me recovering in the ICU in July, trying to process the past few days.

Standing in the ICU on Tuesday, I couldn’t defend myself against this surge of panic, irrationally telling me that I was trapped the moment we entered, that I wouldn’t be allowed to leave. Panic disorder, at its core, is a malfunction of the “fight or flight” instinct — I was a cornered animal. (I don’t realize how powerful the brain is until it’s processing hundreds of memories in the space of a few seconds.) Thankfully, we were out of there within five minutes, and I was able to shake off the anxiety.

Minutes later, I was on the operating table getting fentanyl through my IV. Like I said, it’s a little procedure, so I didn’t have to be put to sleep. But feeling tubes getting shoved in and out of the stomach/intestine isn’t pleasant, so pain/dopey drugs are helpful. While lying there for the next hour, I allowed my mind to drift and consider the source of my anxiety — the ICU room. A room? Giving me anxiety as if the room is something animate and out to get me? In my drug-induced haze, it all seemed silly.

Just recently, Kristina told me that I should stop thinking of the ICU in a negative light, and instead think of the good that came out of it (see last post). I read this book called Wisdom Sits in Places, and it explores the significance of “place” for the Apache people, specifically how the places were named after whatever made them significant. They named the places. They decided the significance of those places. They could name a river “First Water” because it was the first body of water the tribe discovered in the area, or they could call it “Blood River” because of a murder that occurred there. It’s their choice.

Couldn’t the same concept be applied to my connection with the ICU? I’m not gonna rename the room “Party Land,” but I can decide the significance of it. I should be able to face that room and thank God that he gave me strength and purpose despite all that was happening. I should face it and remember the sacrificial love my family, Kristina, and many friends showed while I was in there. I should face it and realize how far I’ve come, rather than letting the memories of it drag me back.

Isn’t new perspective pretty dope? And speaking of dope, I guess drugs really are good for finding new points of view. BUT DON’T DO DRUGS, GUYS! Anyway, as I embark on my journey to San Francisco, I will be pondering the significance of Hawai‘i. I’m going to miss this place and you brilliant people.


A G-J tube is a feeding tube that enters my stomach and small intestine. I haven’t really told many of my friends about it, because I get pretty embarrassed. But I’m kinda over embarrassment now. Since 2010, I’ve been forced to rely on nutritional supplements through the feeding tube in order to keep from being malnourished. While cystic fibrosis is called a “lung disease,” it affects nearly my entire body — including my ability to absorb fat. On top of that, having an average heart rate of 120, breathing many times harder than I’m supposed to, and constantly fighting off infections … that leads to many calories burned (and many much-needed naps). I used to get these feeds while sleeping, about 2,500 calories. Since my last hospitalization, I’ve needed 4,500 calories to keep weight on.
Child with G-tube Taken from 88661_1.psd KOD Digestive Diease Set 2

Adamantium Joy

Note: I tried to write this post in a way that wasn’t “overly Christian-y” because I want this blog to appeal to people who aren’t into that type of stuff. Wrote a draft and it all felt wrong. Gonna give credit where it’s due, and describe things as they are.

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“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.” -James 1:2-3

Three months ago, I was doing a Bible study with Kristina about the concept of “joy.” There’s the secular definition of joy, which is a feeling of great happiness. Then there’s the “Christian definition.” To a Christian, joy is having confidence in God’s plan and seeing beauty in the world. It’s tasting the “living water” and not being thirsty.

During the study, I found myself in tears as I told Kristina what joy felt like to me and realized I was describing a memory rather than something I was actively feeling. For several weeks, I had been struggling to cope with being deaf. I was a recluse and stagnant, wallowing in self-pity and loneliness. With deafness, I can be in a room filled with people and feel completely alone. With deafness, I have to face the idea that I might not be able to pursue my career goals. I was broken. I had closed my ears to the world and to God, causing a spiritual dryness: depression.

I begged God to “fix” me that day. And he broke me more. Just days later, I found myself facing death, getting lost in hallucinations, and being told a lung transplant was my last shot. My spirit was smashed to smithereens again and again and again by torturous struggles in the suffocating confines of my hospital room for 44 days. And it was there that I rediscovered joy. In my brokenness, I went from, “God, I want you,” to, “God, I need you.”

Romans 12:2 says, “Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing, and perfect will.” I was able to break free of the world of suffering that debilitated my spirit and experience that promised change in perspective. I’m not saying I am constantly happy. I still have the occasional panic attack, and I often get sad and frustrated. But the joy brought about by my strengthened relationship with God has made me:

  1. Love more.

I am naturally a bitter person that actively seeks out faults in others. I hate admitting that, but it’s true. The biggest sin I struggle with is gossip. Now, though, I seek out the beauty in others. I am able to love more easily and more powerfully. Isn’t it odd how humans intentionally exhaust themselves with negativity when love is so refreshing? I don’t want to do that anymore. Hey, I’m Brad. And I love you.

  1. Be unafraid of the future.

I know the next several months will be painful, whether I get the lung transplant or not. A series of too-crazy-to-be-coincidence things have happened the past couple months, and they make me confident I am walking the path God wants me to.** I don’t know if the path ends with death or a happy new life. The thought of an early death has been a source of great anxiety since I was a little kid. Now, I feel a great sense of calm. I just want to obey Him.

One of my favorite verses is 2 Corinthians 6.10: “Our hearts ache, but we always have joy. We are poor, but we give spiritual riches to others. We own nothing, and yet we have everything.” Just a couple days ago, Kristina was talking about how I seem more satisfied with life now than I did before this whole health fiasco. She asked if I would rather be healthy and dissatisfied, or be in my current position. I responded that I would rather live one more day with the Holy Spirit and sick, than thousands without it and healthy. I value my spiritual health much, much more than my physical health. I may have lost much, yet I have everything. I am joyful.


Oh, yeah. The meaning of my blog title? Any nerd will tell you that adamantium is the most unbreakable metal in the Marvel Universe. “Unbreakable Joy” is a characteristic I hope to embody from now on.

**I’ll talk about these events in another post!

PAINNN, THE PAINNN

I said I would write about the meaning of my blog’s name for this post, but the subject of joy is very dear to my heart, and I just can’t write about it now. Why? Because I’m in some of the worst pain I’ve ever experienced. So I’ll write about the one thing I can think about: pain.

A couple weeks ago, I started getting a “stabbing” sensation in my left lung. Of course, it didn’t really feel like I was being stabbed. That would be ridiculously painful! I just don’t know how else to describe it. Then three days ago it turned into a STABBING sensation. Seriously, now it feels like I literally have knives being pushed between my ribs. It’s ridiculously painful! Yesterday morning began with me falling off the couch and shouting, “AGHHHHHHHH!” at the top of my lungs for like ten seconds straight, as if shouting would make the pain leave my lungs faster. My neighbors probably have plenty of questions about what goes on in my house by now.

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Me yesterday morning.

When it’s not early in the morning and I’m able to think clearly, I have more efficient methods of pain management. Nothing beyond the occasional back massage from Kristina or my parents takes the physical pain away (I’ve tried every pain med!), but I can train my attitude to better handle getting through the day.

One method, is to smile. No, not because I’m trying to look tough, but because it makes me less stressed. It’s scientifically proven. Your brain follows your mouth muscles apparently. I used to have to attend really … passionate … meetings at the school newspaper I used to work at, and I’m sure I looked rather passive aggressive when I would respond to anger with a huge (pretty forced) smile on my face.

Sometimes, I take it a step farther and laugh at myself. Yesterday, I couldn’t find the strength to move just a few inches over to pick up the remote that fell off the couch. I just hurt too badly. Then I remembered that just a couple months ago my organs went into septic shock and I almost died. I had to relearn how to walk and even how to breathe properly. I pushed myself so hard and was so proud of my determination and hard work. And here I am stressing out because I’m too much of a wimp to reach a remote that’s a few inches away? I laughed at myself and picked up the remote.

The best thing I can do to handle my pain is think of the wise words of my father, repeated so often through IV placements, toe stubs, pulled muscles, and various scary medical procedures: “Builds character!” And it’s true. One of my favorite verses is found in James 1:2-3, “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.”** Every time I’m going through pain, I think about how much more easily and patiently I’ll be able to handle future sufferings. Any time I feel like I can’t handle the pain, I can say, “Hey, at least it’s not as bad as the time the docs shoved a —“ Okay, never mind. You don’t want to read about that…

Well, I’ve done my rambling and I’m ready to heat up another hot pack and beg my dad for a massage. By the way, doctors don’t think the lung pain is anything serious. Just pulled muscles from all the coughing and general weakness (rude!). They told me to take more pain meds and hopefully I’ll start feeling better in “a few days.” You bet I forced a smile on my face upon hearing that advice.

Next post: Hopefully the meaning of my blog title?

**Note: I know this is talking about trials of faith, but I think it can apply to physical trials as well!

Why, though?

After two months of constantly telling people I was going to do this, I can finally say: Hi, welcome to my blog.

First off, I’m Brad Dell, a 23-year-old freelance writer and editor, history enthusiast, Marvel and Star Wars fanboy, ENFJ, and Christian. I also happen to have cystic fibrosis, anxiety/panic disorder, deafness* (as of May ‘16), and mild diabetes. But more on that later.

Now that you have a very, very brief snapshot of who I am, I guess it would make sense to start off with saying why this blog is being created.

I have three purposes in writing this:

  1. To write.

This is the most basic reason. Unfortunately, I’m not able to write articles as often now since conducting interviews is a bit difficult when I can’t hear what the person is saying.* So, to prevent a rusty writing hand (or typing hands?), I’m going to try to consistently write in this blog. Plus, nobody talks about one of the worst parts of deafness: you get really bored. Hopefully this can take up some of my time.

  1. To get things off my chest.

Another thing that deafness has made difficult: seeing a therapist. I don’t believe people should be ashamed to say they need help, so, yeah, I need help. I took an “autobiographical writing about chronic illness” class this past semester and, wow, there’s something incredibly therapeutic found in writing about my struggles.

  1. To inspire.

But don’t worry! It’s not all about the struggles. This blog is also about how I will never, ever let these battles topple me. While I’m nowhere near perfect at handling things, my hope is that someone out there—whether they share my problems or are just having a difficult time finding positive perspective in life—can find inspiration in the people, the journeys, the situations, the philosophies I write about.

So what exactly will I be writing about?

  • Lessons learned in my relationship with God. Don’t exit out of the webpage so fast—even if you aren’t “religious,” you can still find value in many Christian ideals. I promise.
  • Stories about people I’ve met, about my day, or about my childhood. No fiction, just genuine stories that have formed my perspectives on how to live the good life.
  • Updates on my health. With the possibility of a lung transplant looming, things could get scary/crazy. But the outcome could be marvelous.
  • Random ramblings. Sometimes, I just have to say something about something.

Tune in whenever you want, and feel free to comment thoughts or critiques!

The end goal for this blog is for me to have a lung transplant and cochlear implants, and be enjoying living a fresh life so much that I don’t have time to write anymore.

Next post: The meaning behind the blog name, Adamantium Joy.