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

Freewriting becomes therapy for the Sirens’ song of nostalgia

If you focus too much on the grass being greener on the other side, you forget to grow new things on the current side — in your reality.

“A-L-O-H-A, a little aloha in our day, spread a little aloha around the world.”

The voices of The Mana‘o Company blast out over the bus speakers on the way to the beach. The warm air smells of sunscreen, spam, teriyaki. Dozens of kids in Summer Fun shirts trade lukewarm musubi for items in Zippy’s bento boxes. They bring out their Japanese-edition Pokémon cards to brag the moment chaperones turn their backs.

Shelby and I are sick to our stomachs, in the best way possible. Half-eaten rock candy lollipops and emptied bottles of rootbeer cover the backseat of the car. Johnny Cash’s cover of “Hurt” is playing and I keep cooing the wrong lyrics from my blue-purple candy rock-stained lips, “What have I becommmme? My Swedish friennnd?” We’re driving from a cave in Tennessee. The cave scared me, comforted me. I couldn’t decide which. It was frigid and pitch black in parts. You could hear water dripping from a mile away in there, drips occasionally interrupted by the flutter of a batwing.

It’s about 9 in the morning and I just finished reading the last Harry Potter book. I started about 8 hours earlier, after a midnight release party at Borders. A half-empty box of Bertie Bott’s Every Flavour Beans is squished between my arm and the couch cushion. I rub tears and crust from my eyes and look over to see that Alex had fallen asleep on the other couch long ago. So much for promising an all-nighter of reading. His little brother Ethan is watching Power Rangers and the smell of spam fried rice is wafting in from the kitchen. I didn’t know how I felt about the ending of the series. So I turned back to page one and began again.

It’s been a long year. How many times have I said that? And when will I get over it? I’m not sure. I feel whiplashed by it all. My head is still spinning, spinning, spinning. But it’s all done, I hope. When my head stops spinning, I don’t know where my eyes will land. Will I write a book? Go to seminary? Go to grad school? Get a journalism job? A non-profit job? A historian job? Will I live in the Bay? In Texas or Oregon? I don’t know.

I planned out my whole life once upon a time, but it didn’t account for going deaf, getting a lung transplant, and moving off the island. It feels like I lost everything, despite all I’ve gained.

I was stuck in bed and blinded for a couple days because I couldn’t fit my glasses over the cochlear implant surgery bandages. I spent hours submerging myself in nostalgia. In cherry-sweet childhood memories like the ones above. Times where things were simple and relatively unaffected by health. When I was content with just enjoying the pleasures of life. Nostalgia is dangerous for us diseased folk; people who are constantly losing pieces of themselves and forced to live in a consistent state of discomfort.

“Nostalgia” was first coined by a 17th-century medical student who described the astute homesickness experienced by Swiss mercenaries fighting away from home. A defining struggle of the past year’s fight is that it was away from my friends, Hawaii, home. Even worse was knowing that I could never return outside of brief visits because Hawaii doesn’t have a transplant center. Odysseus fought years and years for his life then had to fight more to return home. But at least he got home in the end. I envy that.

When Odysseus’s crew encountered the Sirens, they plugged their ears full of earwax so they wouldn’t hear the hypnotic singing and turn the ship from home. I didn’t need the earwax, I’m already deaf, but I fell for the Siren’s songs of nostalgia anyway. My childhood bubbled up to challenge me, to say things are better now with new lungs and hearing on the way, but will things ever be as good as when you were carefree? When you had a plan and a home? I began steering my ship away from planning the future, from planning a new home. I wallowed in melancholy, in self-pity.

If you focus too much on the grass being greener on the other side, you forget to grow new things on the current side — in your reality.

I was writing those memories above randomly — just to write, not really for blogging purposes. And in the process of my rambling, I realized, just now, that the memories I chose were all from times shortly after I’d moved from ‘home.’ The first when I moved to Hawaii in 2001. The second when I moved to Tennessee in 2005. The third when I moved back to Hawaii in 2008. Just days before each memory, I had been miserable over losing my last home. But each time, I built a new life.

Despite the whiplash, I feel strong. I’ve beaten medical odds, I’ve stretched deep spiritual roots where there was once solid rock, I’ve exceeded my own physical expectations. A couple weeks ago, I went for a run along the Monterey coast. I ran to the edge of the ocean, where the waves clash in an area called the Restless Sea, and was screaming (in my head), “I DID IT. I FREAKING DID IT. I WON.” Projecting out into the wide sea, as vast and limitless as the potential of my future.

I can create a new future and a new home. I don’t know the answers yet, but God’s Plan is still running and I’m still on board. I’ve survived and now I will thrive. I’m steering my ship away from the Sirens and plotting a course, full-speed.

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.

Doing Better Than Fine

Some updates from the past couple weeks, plus some exciting news.

A lot has been going on the past couple weeks, so I’ll spare you my usual ramblings and give some quick updates!

6-month-old 24-year-old

Has it been six months already? My old lungs were removed on the night of Jan. 15 and I woke up with new ones on the 16th. Thing is, they don’t really feel like “new lungs” anymore. The pain and discomfort has gone away, and CF already seems like a bad memory. They feel like “my lungs” now. I’ve already done so much with these lungs and I’m stoked to do even more. I will be traveling through New Mexico, Arizona, and Colorado in the first couple weeks of August. The best part is I’ll be seeing several old friends, meeting a relative, and hanging with Shelby (my sister). We are calling the August trip “Brad’s Victory Tour.”

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 A trophy for beating atrophy

I graduated! Again. This time from pulmonary rehab. My rehab instructor said I had the biggest improvement he’s ever seen—never thought I’d hear that I’m good at working out! Now I get to work out at a regular gym instead of at the gym of retired Olympic athletes. I went to Capitola after my last rehab visit to meet Kathleen’s family and hang out at the beach—which made for a nice celebration. At one point, Kristina was sitting across the beach. Feeling euphoric from my latest victory (and a good dose of coffee), I decided to run the length of the beach to meet her. I felt a bit like David Hasslehoff, minus the tan and bulging muscles. It was the longest run I’ve had outside the gym since my high school years. And dang, it felt good. Shout out to Kathleen for the celebratory photos!

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Goodbye, Pickles and Tubbles

Pickles, my PICC line, and Tubbles, my feeding tube, are no longer necessities in my life. Hey, if you had pieces of rubber stuck in you for years, you’d name them too. Maybe. I had Pickles since last June (I used Chester, my port, before then—a total of 21 months of 3-5 IV doses a day) and Tubbles since 2010. They were good friends, sorta, but I shall not miss them. Pickles was removed from my arm a couple weeks ago. Tubbles will stick around for a couple months although I haven’t used him since last month.

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Holding my dear Pickles.

The big-ish sick

I guess things have been going too smoothly lately! I finally had my first run-in with infection (which I consider to be quite extraordinary due to my crippled immune system). I woke up last Saturday with a fever and overall feels-like-I-got-hit-by-a-bus feelings. We went to the ER and spent 10 hours doing tests and receiving IV fluids (ironic that I needed an IV, since I got Pickles removed just days before). Somehow, the sickness went away really quickly, though! I feel better than fine today.

The next -plant

Got the transplant done, now it’s time for the implant. My cochlear implant surgery is scheduled for Aug. 31! Activation of the implants will be on Sept. 29. To say I’m excited is an understatement. I’ll definitely be blogging about the experience of being introduced to sounds again.

Future visions

Speaking of deafness, I was asked by a transportation official over Twitter to suggest ways airports could better serve the deaf and hard-of-hearing. The person reached out to me after I mentioned how nervous I was to go through TSA while deaf, since officers can sometimes overreact if you don’t understand them. It’s cool to be able to use my experiences to provide practical ways others can help the hearing loss community.

I’ve also been given a new opportunity: to write a weekly column for Cystic Fibrosis News Today! It’ll be great to have a platform that speaks more directly to people with CF and their loved ones. More on that later, so keep an eye out for my first post!

Annnnd, on top of all that, I’ve created an Adamantium Joy Facebook page. The page will share blog posts from myself and others, as well as smaller “tid-bits”: informational posts about CF, deafness, and transplant; small updates; articles that I think will interest my audience; and hopefully some original videos I’m planning to create. Give it a “like”!

www.facebook.com/AdamantiumJoy/

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Tomorrows

“Live like your donor is watching.”

That’s a phrase I’ve read/lip read countless times since my transplant. My donor added tomorrows to my life, and I don’t want to waste them. I hope they were watching the past few days.

Saturday

I wasn’t appreciative of nature for most of my life. My family visited the Grand Canyon when I was a kid but I barely saw it. Third-grade Bradley was too engrossed in the new Harry Potter book he had just picked up, refusing to get out of the car or look up for more than a few seconds. Still kicking myself for that. Until the last months of my time in Hawai‘i, I didn’t appreciate the reasons the islands are called “Paradise” by so many. But becoming deaf has had just as much of an effect on my eyes as it has on my ears. Since I can no longer find awe and comfort in my favorite sounds, I enjoy those two feelings through sight instead. The natural beauty of the world has always been in front of me, but I didn’t see it until recently.

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Kristina and I took a mini-road trip through a nearby mountain range that reminds me of the Smoky Mountains my family used to drive through in our Tennessee days — only with Lamborghinis and tricked-out cycles speeding past (typical Silicon Valley) instead of rusted pickups. We were just “taking a drive.” No purpose other than to sip our iced coffee and take in our surroundings.

You know that golden hour between the afternoon and sunset? Where it looks like God wrapped every tree leaf in gold foil, and the rays of the sun peek through here and there, hitting the road and making it glitter? That’s my favorite time of the day to focus on the blessings I’ve been given. To be grateful and let myself happily cry — happy tears aren’t uncommon these days. To experience that hour, up on the mountains and with Kristina at my side… pure bliss.

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Sunday

My dad got discounted tickets to Great America from his work. I was so stoked to finally ride a roller coaster for the first time in years. Alas, my transplant team didn’t think coasters would be a good idea while my surgery site is still healing. But there were a few other rides to check out so we went anyway.

It was a surreal experience. We were standing in probably the noisiest area of San Jose — screeching steel-on-steel coasters, screeching riders, screeching kids begging for treats — yet I didn’t hear a thing. Every once in awhile, my ears suddenly hurt from standing too close to an intercom or roller coaster, but that’s as close as I got to hearing things. Even going on the rides is a different experience than what I’m used to. My heart rate is about a third slower than it was when I was actively battling infections, so the plunges and spins from the rides didn’t have as much of a thrill as they usually do. But, man, it was still fun.

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I haven’t gone to concerts, theme parks, conventions, or anything that draws a big crowd in over a year. I’ve mostly been living in solitude other than when I go to a shopping center or the occasional church event (although I usually end up just sitting in the car out of frustration with my deafness). It felt so satisfying to be around thousands of people who were gathered in a place to do nothing more than have fun.

I’ve been trying to avoid sugar and fried stuff, but it would be ridiculous to skip out on funnel cake.

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Monday

I didn’t just not care about nature “back in the day” — I hated hiking. To me, it was just a waste of energy to walk uphill a bunch and stare at trees and water falling off rocks. I didn’t get the big deal.

But I needed to waste energy, pronto, after finding out I would have to wait an extra month to get my cochlear implant surgery due to scheduling conflicts and so I was freaking out real bad. Anxiety disorder is basically when this huge ball of energy builds up in the chest, getting bigger and bigger, squeezing out from your eyes in tears and making the brain “rngvuirenuvjeroivjeriu.” The energy can eventually get too big for the body to contain and spark a full-blown panic attack. When I feel the energy building, the best way to stop the attack in its tracks is to somehow expel that energy: by tiring myself out. So, the moment Kristina mentioned wanting to go on a hike “one day,” I said we’re going now.

The hike up to Castle Rock was the most I’ve challenged my new lungs outside of my pulmonary rehab class. My legs burned, but that was okay. It was a good burn. It’s still so cool to feel my muscles get tired before my lungs do. I would not have been able to do this hike just a few months ago. Or even a few weeks ago. And, hey, those trees, rocks, plants were actually really pretty. The deer that ran across the path was even prettier. Maybe hiking isn’t so bad after all. Kristina and I are already planning to go again.

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These might seem like “pretty decent” days to the average person. To someone who might be dead today if transplant wasn’t an option, these days are miracles. I hope my donor isn’t just watching, but is also able to feel what I feel and know they (or their family) made the right choice in checking off that organ donation box.

And I hope you, whoever you are, read this and decide to become a donor too so you can potentially add tomorrows to someone else’s life: RegisterMe.org

The Joy of #Gainz

I spend every Tuesday and Thursday at a gym that is used exclusively by elderly, retired Olympic athletes (and me, the only young guy).

I used to spend every Tuesday and Thursday at a gym used exclusively by elderly, retired Olympic athletes (and me, the only young guy).

Okay, it’s actually a pulmonary rehab class at the local hospital. But most of my elderly gym buddies were definitely stronger than me. When I first started attending the class, the areas on my arms and legs where muscle would normally be were useless, wobbly flabs. In the words of a physical therapist I met during my time in San Francisco, my muscles were “totally wasted.” It’s also pretty difficult to breathe heavily through my Bane-esque anti-bacterial mask and my right shoulder has been killing me ever since the big surgery. (Now I’m just making excuses.)

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Seriously, this mask sucks!

So, anyway, all these elderly folk were whooping me at every exercise, forcing my insecure self to form this imaginary narrative about them being world-class athletes once upon a time.

They deserve to be thought of as superhuman — they’re extraordinarily kind people. While I’m probably one of their youngest buddies, I’m probably not the only deaf one. The moment they learned I couldn’t hear, they all took to smiling the most smiley smiles at me and using hand motions to communicate (lots of thumbs ups when I do well at an exercise). And they always show appreciation for my Star Wars and Marvel shirts — the only short-sleeved T-shirts I own. They also bring loads of sugary baked goods. The physical therapists chide them and say it’s bad for their health — one hand wagging a finger, the other hand holding one of the desserts. Who can resist treats from people who look like their grandparents? They’re great!

The reality is all these people have breathing troubles of some sort. As I’ve gotten stronger, I’ve come to realize that I’m no longer at a gym used by retired Olympic athletes. I’m at a gym for the sick. My belief that these were super-fit people was bred from my super-weak, recovering-from-major-surgery perspective. While I’m steadily getting stronger, stronger, stronger, most of them are getting physically weaker. Thanks to them attending rehab, it’s a “one step forward, two steps back” deal. If they didn’t attend, it might just be “two steps back, two steps back.” I’m nearly jogging on the treadmill, while the man next to me is grabbing for his oxygen mask every few seconds as he steps.. steps.. steps.. More a slow march than a walk. I’ve noticed his oxygen needs have increased since we first met… and that frightens me.

Frankly, many are as unhealthy as I was before transplant. And I now realize how bad it really was for me. I guess it was hard to be self-aware of my physical weakness before. I just walked several miles the other day with relative ease, and so it now seems so laughable that I once celebrated doing one mile in a single day.

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Remember when I celebrated walking a mile in January?

I always try to be transparent on this blog: pre-transplant, I felt bitterness towards my fit peers. I hated that their athleticism emphasized my weakness. Another confession: I often feel self-pity for my past self, built upon hindsight. I view “Sick Brad” as this totally different person. And I pity him, and I sometimes pity my exercise buddies because I see Sick Brad when I look at them struggling. It makes me sometimes want to hold back from working hard, because I don’t want the others in the gym to feel the bitterness I once felt towards those who were stronger.

(Again, this is just me being transparent. I fully recognize that those feelings are totally un-cool.)

My exercise buddies are much wiser than I, though, and based on their genuine excitement about my rapidly improving health, I think they would want me to focus on gratitude of now rather than the self-pity and bitterness of then. Since I came to this conclusion, I’ve begun to push myself much harder than ever before. I’m adding weights, adding speed, adding different machines, adding miles, all that. I’m working myself into a puddle of sweat and seeing noticeable improvement between each rehab session. And the joy on the faces of my classmates hasn’t diminished. They’re all still cheering me on. I’m just relieved the rehab class is filled with people who are much more mature and selfless than Sick Brad. And I hope I’m wrong about them not getting healthier, ‘cause they deserve the best.

Anyway, I still have a whole summer of rehab left, so I’m going to update my blog every once in awhile to record my progress. I’m going on big trips to Arizona, New Mexico, and Colorado in August, so I want to be in tip-top shape by then.

Since I first began rehab in late March, I:

  • Went from workload #1 on my Nu-Step machine to workload #6, also doubling the rate of leg pumps and tripling time spent on the machine (15 minutes).
  • Went from 1.5 mph on the treadmill for 5 minutes to 4 mph for 15 minutes.
  • Went from 1 lb. dumbbells to 5 lb. dumbbells.
  • Went from 3 minutes on the elliptical to 15 minutes.
  • Started stair machine for 5 minutes.
  • Walked 7.6 miles on Monday and climbed 17 floors, walked 6.1 miles on Tuesday. I forget how much I could do in March, but 4 miles was a huge accomplishment in April.

My legs are getting much stronger, but there’s still a lot of work to be done. Unfortunately, I can only strain my arms a little since I still have my PICC line in. Once that’s out (hopefully in July) and my incision heals a little more, I’ll shift focus to working out my upper body.

Should be fun! Got the new lungs; let’s get a new body (preferably by working out instead of via transplant).

Cathedral

Okay, guys. I’m finally doin’ it. I’m living like Theo R. Since writing that post, I discovered living independently as a deaf dude can be rather disappointing and scary: people can be incredibly rude/mean about my poor communication skills, crossing streets without being able to hear cars is dangerous, and ordering things from cafes/restaurants can be facepalmingly frustrating. But with new lungs comes new confidence. Sometimes I have to remind myself that if I can handle getting cut open, then I can handle glares, rolled eyes, and getting hit by cars (ok, maybe not the last part).

*I’m mostly writing the following for my own benefit — so I can read it on days I feel discouraged about being adventurous.*

Wednesday was beautiful. I woke up packed with so much energy, my leg muscles were twitching and my smile wouldn’t leave my face. The towns near my house that I usually frequent were too small for my energy that day, so I took the bus to downtown San Jose by myself for the first time (I know, I sound like a little kid being proud of myself for visiting the big city on my own).

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Took this pic for a friend who’s in Rotary Club. My energy’s pretty evident here.

I started things off with a cold brew coffee from the delicious cafe, B2, as if I needed the extra energy. The barista saw my famous “Deaf, but friendly” pin on my shirt and was super kind, pointing to cream and sugar rather than trying to get me to rely on lip reading like most baristas do. People who go out of their way to help like that really make a difference in my day. I hope my hefty tips make a difference in theirs. They deserve it! (If you work in a service industry, feel free to ask me how you can help deaf people with accessibility.)

Caffeine pulsing through my veins, I set off to check out the MLK Jr. Library a few blocks away. This huge library is run cooperatively by the city and San Jose State University. It had a Civil Rights Movement exhibit that was pretty intriguing: loads of California newspaper clippings provide a west coast perspective on the movement I hadn’t considered before (having mostly studied it in the South). The library also had the biggest collection of indie graphic novels I’ve ever seen. I’m mad at myself for not bringing a bag with me so I could check some out.

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That whole building is a library!

I toured the San Jose State University campus, weaving my way around students studying for final exams on the lawn and thinking how crazy it is that it’s been about a year since I graduated. Probably my most eventful year yet — and simultaneously the best and worst year, as confusing as that is.

I took a stroll around the historic area of downtown and learned plenty about the city’s history thanks to placards posted along the streets. The sweltering 93-degree weather forced me to duck into the nearest area I could find with free indoor public seating. I found myself in the Cathedral Basilica of St. Joseph, just me and a lady in this massive sanctuary. I’m not Catholic, and I usually frown upon the idea of cathedrals for various reasons, but it was a moving experience to sit there and pray to God, thanking Him that I have the privilege to walk freely and happily. I also reflected on my favorite short story, “Cathedral,” by Raymond Carver. In the story, a blind man teaches a disillusioned man that “looking” is not all there is to “seeing” — the blind man’s disability has given him a different perspective on life than most. For all the trouble it’s caused me, deafness has done the same for me.

A park in the center of the city was my last stop. I saw this dude in a Superman shirt buying what looked like heroin, and I felt this sadness come over me. The guy was so young and healthy-looking, I couldn’t help thinking he was wasting it all. I sat down on a bench and five minutes later, the drug dealer was in handcuffs just feet away from me and the Superman shirt guy was patting him down, shirt now tucked behind a police badge on his belt. Then a couple more dealers in handcuffs and undercover narcs came to join the party. That was a pretty interesting way to cap off my day.

By the end of all this, I had walked about four miles. Just several days ago, two or so miles was my max (mostly due to some extreme shoulder aches I’ve been having when I stand too long), and remember it was about 93 degrees on Wednesday. Looks like my pulmonary/physical rehab has been paying off! More on that topic later. All-in-all, it was one of my best days yet. I only got flipped off once by a lady riding a bike (I didn’t hear her coming behind me, so didn’t step aside), and only almost got hit by a car once! Totally worth it for a day of independent adventure.

I wrote all this in a cafe at Campbell (had another nice barista!) today. Time to explore the area before the caffeine wears off!

P.S. Found a lovely ‘joy quote’ today: “Life is a shipwreck, but we must not forget to sing in be lifeboats.” – Voltaire.

The Almost Not-Stabby Ides of March

Sorry about not blogging these past weeks. Things got tough for a while because of medicine side effects, which made it difficult to sit down and focus on writing. Nobody said getting a transplant would be easy, I guess! Here’s a quick catch-up:

Despite my side effect troubles, I still had a lot of fun times. I watched plenty of great movies, visited some of the best museums I’ve ever been to, had green tea and mochi at the gorgeous SF Japanese Tea Garden, ate loads of crab (the only meat I could stomach with all my nausea), got my first-ever professional massage to fix some back problems, caught up with Jay (my Ka Leo advisor/someone I consider to be a mentor), and hung out with fellow transplantee (heart AND lungs) Kathleen! San Francisco is truly a fantastic city. But, man, I was ready to go home—and it feels great that I’ve adjusted enough to California to consider San Jose “home.” The doctors finally released me this past Friday. Once I returned to San Jose, loads of my problems—leg cramps, foot/ankle swelling, nausea, anxiety, etc.—magically disappeared.

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Yesterday was my last doc appointment for the next three weeks. I had a bronchoscopy to check for any rejection/infection, and the results are in: all clear. My lung function wasn’t as high as I was hoping for (52%, a 1% increase from my last testing) and my weight was down 15 pounds, though. That freaked me out big time. But my doctor really wasn’t worried. He reminded us that I just shed a ton of water weight (from all the swelling/steroids) and that my lung function is still going up, not down. Plus, all the nausea/cramps/swelling/yaddayadda was keeping me from exercising my new lungs much. So, we expect the next tests to show much better improvement. Talking to Kristina tonight also helped—she reminded me that my lung function is still better than it was before I started my health spiral about two years ago.

Today, I celebrated the Ides of March by—ironically—not getting stabbed (by nurses). It was my first day of being truly independent. My parents both returned to work (I’m super happy for them), so I had to handle all my medications and whatnot. Day 1: Success! Woke up, had a shower and floral tea, played video games, read the news and some blogs, walked to a café for some mocha and Greek salad, read Raymond Carver poetry, walked home, then read some more in my backyard hammock. The warm weather is just, ugh, amazingamazingamazing, after all those cold SF days.

It’s fitting that I’m reading Carver’s works. A lot of his material is about finding beauty in what is usually thought of as ordinary/mundane. I don’t take the little things (like waking up in the morning without gasping for air, the flowers growing in the cracks of the sidewalks on my walk) for granted anymore. Everything was beautiful today.

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I spent about three hours cooking dinner from scratch—black-eyed pea jambalaya, smothered green beans with bacon, and cornbread—for my parents and my nausea-free-self, and dang! Cooking is quite the workout when all your arm/shoulder muscles have wasted away. But it was worth it. My mom said I cook like a Southern grandma, which is the best compliment you can give a cook, in my oh-so humble opinion. Kristina called me a “stay-at-home son.” I guess I’m fine with that until I’m strong enough to get a full-time job.

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Now I’m nursing my sore back on my acupressure mat. I guess the Ides of March is stabby after all… Dad just came in and stabbed me with a needle—blood thinner medication (oh yeah, I got blood clots in my left arm. Ouch.). “Et tu, Dad?” But he reminded me that today is exactly two months since I got rolled into surgery for the lung transplant, so I forgive him.*

Two months ago, I was getting sedated on an OR table, uncertain if I would even wake up. Tonight, I go to sleep with a full belly and a smile. Excited to wake up for another successful day.

*Totally joking, I’m so grateful he gives me the shot because I’m too much of a weenie to do it myself.

Great Are You, Lord.

I find it difficult to publicly confess to struggling during this process, as I always want to give a message of positivity. But this last week or so has sucked incredibly bad! People said the weeks after transplant would be difficult, but I really underestimated things. I really thought I was broken for good — I was sobbing to my parents about it.

But one of the things that has been sucky — not being able to sleep at night — has, ironically, helped me. Just being up at night, in pain, I’m given a lot of time to pray and think. Last night was when it finally really, really dawned on me that the air I’m breathing is coming from the lungs of another person. What a gift. 

One of my guilty pleasures is watching that show This Is Us. Last night’s episode was darn fine television. It was about life cycles, ripe with symbolism. About lives and life roles intersecting. About what makes a life meaningful: how it begins and ends. Just really heavy stuff.

How could I not think of the man who gifted me his lungs? How meaningful his end was? That it gave me a new beginning? How could I not wonder what life he led? These lungs breathed his first cries as he left his mother’s womb. These lungs gave him his first and last laughter, first and last gasps of surprise, first and last heaves of pain, first and last words. Now I carry them. What an honor.

These past several days have been some of the hardest of my life, and my joy was severely damaged. I don’t know if the original owner of these lungs was a believer. But this morning, I am using the lungs to sit by myself and sing worship music:

You give life, You are love
You bring light to the darkness
You give hope, You restore
Every heart that is broken

Great are You, Lord

It’s Your breath in our lungs
So we pour out our praise
We pour out our praise
It’s Your breath in our lungs
So we pour out our praise
To You only

You give life, You are love
You bring light to the darkness
You give hope, You restore
Every heart that is broken

Great are You, Lord.

– All Sons and Daughters