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.

Celebrating victory with Princess Leia

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

Cochlear implants are a bit like a video game. As I grow more experienced, new levels/skills are unlocked. A sector of my brain’s auditory cortex seems to open up every couple days, allowing me to enjoy a new noise or song. I began with Johnny Cash, transitioned to Marina and the Diamonds, then Hillsong United. Then entire playlists. But the holy grail of music listening has evaded me: uh, Princess Leia’s Theme.

Ok, I understand the snorts and the raised eyebrows. But Princess Leia’s Theme is an ethereal piece of music for me. It makes me think of heavenly Cloud City and its tantalizing plot, of my childhood (Empire was my first Star Wars film), of the ineffable Carrie Fisher — a true princess of the nerdy underdogs.

I live unabashedly as a Wars fan. I turned to it when I was bullied as a kid (partly for being a nerd, but whatever) and when I had the beginnings of panic attacks in my later years. I blasted it in Kristina’s car as we looked out across a field in my old hometown. This was in the days of my waning hearing — I cried as I realized I could wake up the next day and be unable to hear the song at all.

I avoided this song for weeks because it sounded awful the couple times I played it since getting the cochlear implants. My brain has never been tormented by more horrendous ‘music.’ But I had my implants tuned today by an audiologist and got some new processors. Plus, the audiologist did some tests and said I’m doing “better than average” with my hearing compared to others at the same stage as me with their implants. So, I figured it was time to revisit Leia once again.

The song was maybe two notes off but it was glorious. The first day I arrived in San Francisco, deaf and on oxygen, I gazed at the setting sun and thought, “Everything will be just fine.” I looked out at the setting sun of San Francisco today as Princess Leia’s Theme played and thought, “It’s no Cloud City, but everything is fine.”

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I spent four days in a row hanging with new friends from church, six days writing my memoir (14,000 words in), nine months of excellent health, two months of hearing, and I’m about to enter two months of holidays. I can listen to Christmas music this time! And, of course, a new Star Wars film is on the horizon. Life isn’t too shabby.

The grief I spoke of in the past few posts is now a blemish in life where it once was a vortex. My anxiety is also dulling and I’ve been keeping myself busy enough to distract from feelings of trauma. Things aren’t perfect and the mental problems could certainly gain powerful again. But I’m getting through.

Carrie Fisher was an advocate for taking care of your mental health while acknowledging its presence and power. Listening to Princess Leia’s Theme as I write this, I’d like to think she’d be proud of me for getting through and being open with you all about it.

“I am mentally ill. I can say that. I am not ashamed of that. I survived that, I’m still surviving it, but bring it on.” – Carrie Fisher, 2000

“We have been given a challenging illness, and there is no other option than to meet those challenges. Think of it as an opportunity to be heroic — not ‘I survived living in Mosul during an attack’ heroic, but an emotional survival. An opportunity to be a good example to others who might share our disorder.” – Carrie Fisher, 2016

23031592_555002194835735_8794464212676984806_nPS: I got my feeding tube removed after seven years! Now it looks like a second belly button. Annnd the median life expectancy for those with cystic fibrosis got raised to 47 (up from 41)! This is on top of there being more adults with CF now than children. These are ‘just’ statistics and it isn’t as easy as “all kids with CF will live to 47 — heck, it’s not even an average, but a median. But any progress should be celebrated.

It’s time we retire the old labeling of CF as a “childhood disease.” CF life expectancy doesn’t directly affect me since I got a transplant, but I’m still excited for my little cysters and fibros! I pray they experience a much different life of CF than I did.

 

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

Activating My New-New Life

I was in a state of grief for about a week. I couldn’t stop thinking of all the pain of the last year, physical and emotional. I wasn’t going out much because of my cochlear implant surgery recovery and the smoky air from nearby wildfires, so I spent a lot of time just laying in bed and letting myself feel sad, angry, guilty. Just a lot of irrational things I’m not really going to get into.

I try to always make my first reaction to negative emotion to be prayer. But for whatever reason, it took me a week to have that reflex kick in. I prayed hard on Thursday night for quick relief from my negativity, which is something I did just hours before I got the lung transplant call exactly eight months before (to the day). But I was just praying for my emotions, not for something super concrete.

God probably thought I was being boring with my vague hoping.

I recorded notes throughout the next day, several minutes after each event — a habit I have from all my blogging (my memory sucks without notes). Here’s an edited version of what I wrote throughout the day.


Friday morning, exactly eight months post-transplant:

I walk in for my first post-surgery check-up. I think they will be checking the surgery site for infection then sending me on my way. I’m not supposed to be activated until September 29th. Next thing I know, my audiologist is sticking the processors on my head. She sends some “beeps” through the implants, which are interesting in themselves because it’s the most noise I’ve heard in over a year. Then she’s asking me if I’m ready… Ready? For what? I gesture at my dad to record with his phone. Mom will kill us if anything important happens and she doesn’t see. The audiologist clicks a key on her computer.

Ambient noise rises in my skull, vibrating my brain, like that THX sequence in the movie theaters. Absolute silence to being brain-smacked by an overwhelming invasion of noises.

DSC_5168I’m in a pinball machine. You know when you yank the knob to shoot the metallic ball and it strikes a flurry of beeps, boops, pweeps, whistles? Those were the sounds I heard, Super Mario-esque. I realize the loudest beeps are actually my nails clicking against each other and my pants’ material rubbing as I shook my legs in anxiety. My brain isn’t processing noises normally yet — it has to adjust to a new method of hearing (electronically).

Like a pinball is difficult to follow with the eye, it’s even more difficult to focus on a single sound while being assaulted by dozens at once for the first time in ages. I’m used to only having to filter through the singular “sound” of my thoughts.

Then a high-pitched voice pierced the air, Minnie Mouse-soundingmy audiologist’s. Counting: “1, 2, 3, 4 …” I’m trying to keep chill. I don’t know why. Everyone in the roomme, the audiologist, my dad know this is “something else.” Then days of the week: “Sunday, Monday, Tuesday …” And I’m shuddering and crying. Days of the month: “January, February, March …” I can’t stop shaking, it’s like I just slushed an entire gallon of nitro cold brew coffee down my throat. I’m hearing words.

Click here for video of my activation.

My nurse tells me this is the worst the implants will ever sound and that it will get better. But, man, this already sounds fantastic. It sounds wrong and confusing, but it’s sounds. Some other first words, as a test: “Hot dog, mushroom, baseball.” I never thought those, numbers, days of the week, and months would be my first words after 1.5 years of being deaf. I don’t know what I expected. Maybe, “By the power of science and God the majestic, I hereby dub ye no longer deaf!”

The audiologist asks what it sounds like, and I reply, “A trippy cartoon.” My voice is unbearably loud, it’s like having someone shouting in my ear while talking. So I’m tripping over words and losing train of thought as I speak. This, too, should get better with time.

Then my dad speaks. I tell him he sounds like he hasn’t hit puberty yet. It’s like Mickey Mouse speaking, with an ‘aftertaste’ of my dad’s voice. Not sure how to explain that. He laughs and, wow, his laugh is just as I remember it.

Dad and I leave, all smiles. We’re still stunned. We turn on Johnny Cash in the Jeep because his voice is the lowest, so I figure it should sound a bit better than most musicians. It sounds like Dolly Parton covering Johnny, but it’s recognizable! That’s enough for me. Nodding my head to a rhythm is… Am I crying again?

What better place to celebrate than Chick-fil-A? I order my own food and actually have a tear well up in my eye when the cashier asks what type of dipping sauce I want and I respond with ease. I don’t have to worry about embarrassing myself when I don’t understand what restaurant workers are saying. But I might instead embarrass myself by crying everytime I feel glee at how easy it is to answer them now. Don’t judge. While I’m eating, a kid screams. It sounds just like R2-D2 when a Jawa shot him. A lot more interesting than I remember screams typically sounding.

 

I get home, have my first conversation with my mom that doesn’t include text, then get a huge hug from her. Then, we go to my parents’ Bible study, which I guess I can now call my Bible study because I intend to begin going weekly again. I have a lot of socializing to catch up on.

I keep thinking the word, “Fantastic,” because this all seems like a fantasy. I’m going to sleep soon, and I fully expect to wake up and realize it was all a dream. I’ll go to my appointment, have them check my surgery site, then be sent on my way.

Or it’s real, and God answered my prayers.

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Tips For Interacting With Deaf and Hard-of-Hearing

An extensive list of communication and etiquette tips for when interacting with people who have hearing loss.

Finally! Part three of three in the “deaf series.” Now that I’ve told you my personal story and tried to put you in the shoes of a deaf person, I have some tips for how you can go about interacting with deaf or hard-of-hearing people in an efficient, respectful manner.

Some important notes: These tips, split into four topics that have much overlap, don’t apply to every deaf or hard-of-hearing person. And I’m sure I left some out. I use “we” and “us” for simplicity — avoiding “I,” because many of these things simply don’t bother me. Also, I use “deaf” instead of “deaf and hard-of-hearing” to cut down on word count and repetition. There is a difference between the two! Use these tips as guides rather than law — I can’t speak for the entire deaf and hard-of-hearing community, especially still being new myself (so let me know if you disagree!).

 

These tips were gathered from my own experiences as well as from surveys of the deaf community via Facebook support/pride groups.

Communication

  • Some prefer signing (ASL is just one of many sign languages), some prefer typing on phones or computers, some prefer voice-to-text software, some prefer lipreading, some prefer a combination of these things or even other methods they’ve thought of.
    • Do not try to force people to use a different manner of communication if they do not wish to.
    • Not every deaf person can speak.
  • People seem to assume it’s easy to lipread/speechread through an entire conversation. It isn’t! We need context, we need you to face us while speaking, we need you to not speak too fast or too slowly, we need you to be in proper lighting, and we need you to annunciate.
    • And even with that, only 30% of the spoken English language is visible on the lips. So it’s like trying to solve a puzzle while a person is speaking, which gets exhausting.
    • Cue us in on the topic before beginning a conversation. Context helps a lot when filling in the blanks!
    • The more syllables, the easier it is to lipread a word (usually). If we don’t understand a word or phrase, try rephrasing with a synonym.
  • For speaking to hard-of-hearing people, yelling or speaking super slowly does not help. Your lips need to move naturally. For speaking to deaf people, it helps if you actually say the words instead of just “mouthing” things — that way you’re not focusing too hard on your mouth movements, which makes it unnatural.
  • If you work in the service industry or customer service, please just let us email or text. It should be obvious that it’s extremely difficult to speak on the phone, even with captioning systems. Yet, many companies only provide phone numbers as contacts.
  • Please don’t force us to speak. When I became newly deaf, I was still forced to go to class, and a professor wouldn’t excuse me from class discussion. It’s so humiliating to be asked a question in class, not understand the question, then not know if your voice’s volume is too soft or too loud.
  • Oh yeah, we find it difficult to control our voice volume. Just gently let us know if we need to speak up or soften our voice.
  • If it’s dark, just text or sign (depending on the person), as it’s extra difficult to read handwriting or lips without light.
    • Also, hearing aids don’t work so well in open or noisy environments.
  • Charades are great!
  • There’s a big difference between “I can’t hear you” and “I can’t understand you.”
    • Deafness isn’t always/only a volume problem — sometimes the words just sound like jibberish because our ears don’t process them properly.
  • We can’t hear the tone in your voice, so intentions can be misinterpreted! This is where facial expressions are important. It’s kinda like how people always misunderstand sarcasm in text messages if there aren’t emojis or “jk”s.
    • Make sure not to let the facial expressions disrupt your mouth movements or draw attention away from your lips. Say what you’re saying, then follow it up with a frown, smile, or whatever.
    • Not everyone is capable of showing precise, emotional facial expressions, though, and that’s understandable.
  • “Yes” or “no” answers usually help! Nod or shake your head, then follow up with an explanation.
  • More communciation tips!

Respectfulness

  • A common consensus in the Deaf Community is that our most hated word is “nevermind.” Please be patient with us and don’t just give up on trying to tell us something. We hate feeling left out on a joke or piece of information just because you’ve lost your patience with us or don’t want to meet us halfway. Have you ever been with a couple friends and they share an inside joke, but don’t want to let you in on it? That’s how it feels to be told “nevermind,” “forget it,” or “it’s not important.” It’s important to us. If you can’t take back your words with a hearing person, you shouldn’t be able to take them back from us.
    • If texting or writing to us (in front of us), don’t text/write half a sentence, then just delete or scratch it out. It’s the same thing as “nevermind.”
  • Try not to talk about a deaf person with another person as if the deaf person isn’t standing right there. I personally don’t care, but many do. It can be dehumanizing and alienating.
  • Don’t assume our style of communication, then act like it’s weird that we don’t use those methods.
    • (“You don’t sign? You should really get on that.” “Haven’t you ‘learned’ to lipread yet?”)
  • Believe it or not, we can see when you sigh or roll your eyes. I’d never experienced so much sighing and eye-rolling until I became deaf. It hurts.
  • Don’t make comments about how you think deaf people shouldn’t drive or be independent.
    • I had a lab worker actually tell my mom I shouldn’t be allowed to be on my own when visiting for weekly blood draws.
  • If someone says they’re deaf, it’s best to just assume they’re being serious. It’s less awkward to have someone think you didn’t understand their joke than to continue talking to a deaf person as if they’re hearing.
  • Not everyone enjoys deaf jokes. They’re fine with me though.
  • We are easily startled if approached from behind. We can’t hear you coming! It’s like shouting “BOO!” at a hearing person from behind.
    • Try to approach from the side or front when possible, and don’t randomly grab our shoulders/back.
  • Don’t hit us to get attention. You might think of it as a “light tap,” but when you get “lightly tapped” dozens of times a day, it can get crazy annoying or even hurt. Plus, we have personal bubbles too.
  • Do. Not. Call. Deaf. People. Dumb. There’s a long history of deaf people being called dumb, and that’s reinforced a very harmful stereotype. “Audism” is a very real, sad thing.
  • Try to avoid assumptions of if a deaf person is happy or sad to be deaf. Some love being deaf, have pride for it, and wouldn’t take a “cure” even if it was offered. They don’t see themselves as broken. Others hate being deaf and it’s a source of major depression and anxiety.
  • Like I said, many are very proud to be deaf. So cochlear implants can be a very touchy, controversial subject, as many do not like the idea that others think there needs to be “fixing.”
    • Honestly, it’s probably just best to not bring up cochlear implants unless they do first or if they already have them.
  • We don’t hear public announcements over the intercom or whatever. Be a kind neighbor and let us know if there’s an announcement in the area.
    • It’s also frightening/stressful when people around us look concerned but aren’t telling us why they do (i.e. Someone takes a phone call and looks distressed — everyone seems to know why they’re worried except the deaf person, who begins to imagine much more terrible scenarios than what’s actually happening.)
  • Some people like to be introduced as deaf, others don’t. Check with us before introducing us to someone.
  • Check if videos have captions before sending them our way. I think it’s funny when people forget I need captions, but others might not!
    • Please don’t complain if we ask to have captions on while watching television or internet videos with you.
  • It’s difficult to know when someone is talking in a group setting — our eyes can only look at so many mouths at one time! This leads to a lot of interruptions. Sorry!

Other Things We Want You To Know

  • Don’t be afraid of us! People actually seem super nervous to interact with us. We are often nervous too, so let’s just get over it and be friendly.
  • We often feel lonely in group conversations or hang-outs. If you could give us some one-on-one attention, it makes a world of difference.
  • Don’t assume we have trust issues or are rude if we don’t meet your eyes. We’re often trying to read your lips, or we’re exhausted from already reading lips all day. It’s hard to look people in the eye when tired!
    • On the other hand, many people read lips more effectively by looking you in the eyes.
  • It takes a lot of energy to be social while deaf. Sometimes we wander off for a break and it’s nothing to take personally.
  • Hearing aids do not work like glasses — they don’t perfect your dulled sense. They usually make sound echo-y and robotic. Sometimes, they even hurt your ears.
    • This is why some refuse to wear them, even if they have a little hearing left.
  • A lot of us suffer from tinnitus (ringing in the ears) and have various ways of coping with that. Be accepting of whatever those coping methods are.
    • For example, I sing so my ‘inner voice’ drowns out my tinnitus. I am very terrible at singing. My apologies.
  • We have different types of hearing loss. Some have volume issues, some have overbearing tinnitus, some only hear “jibberish,” some were born deaf, some lost it from loud music, some lost it from viruses or medication, etc.
  • We are people. So we are unique. I want to reiterate that many of these tips do not apply to everyone. When in doubt, respectfully ask!

Great Apps For Communicating

  • Google Docs is best for communicating via computer. Use the “Voice Typing” feature.
    • Use “Enhanced Dictation” on your MacBook to use speech-to-text offline. It’s also a bit more accurate.
    • Dragon Dictation is supposed to be excellent, but it isn’t free and I’ve personally never tried it.
  • For phones and tablets:
    • iPhone’s Notes App (the base app already downloaded on your phone) is most accurate! Simply click the little microphone next to the space key and speak.
    • Android’s best app seems to be Google Voice, based off what my dad has told me.
    • Google Docs is also fine for phones, it just lags a bit.
    • Ava is a free app that allows for group conversations and also doesn’t stop recording until you tell it to. The downside is it just isn’t as accurate. But it gets a little more accurate as it learns your voice (it’s based off an AI).
  • Attaching microphones or headphones to a device can create even more accurate dictation!
    • Plus, it leaves the microphone on longer. Without something plugged into the audio socket, devices only record your voice for a few seconds before ending. With a microphone or headphones plugged in, it records for about a minute or so.
    • Again, with Ava, it continually records without stopping.

Golden Rule: We are people too. We are unique. Please treat us with respect while also recognizing we have different perspectives and needs. And expect the same of us.

A great empathy exercise: Walk around for a day with noise-cancelling headphones. Just make sure to be safe! It’s difficult to cross streets and whatnot when you can’t hear cars.

 

Breaking the Silence

Being deaf isn’t easy. Nor is writing about it.

I struggled to write this blog because I normally try to keep things positive. But I’m creating this three-part series to bring awareness to what it’s like to be deaf, which isn’t all rainbows and ponies. That’s not to say I haven’t gained anything positive, and there are many who absolutely love being deaf and take pride in it (this will be covered in my next post). But this post is specifically about the types of challenges faced by those who are hard of hearing or deaf. The answers to how to help remedy these problems are in the next blog post. Check here and here and here if you want more positive writing about being deaf. 


My parents and Kristina weren’t exactly content with the idea of leaving me by myself for five days while they visited Hawaii. I hadn’t been alone for longer than a day in over a year thanks to the transplant process and deafness. I calmly addressed their what if’s, and shooed them away, confident that I would be confident while they were gone. I figured I’d have fun just cruising around the city by myself.

I went out three times before I got so frustrated with the difficulties of deaf independence that I went into hermit mode and stayed home. While that sucked, at least it gave me convenient illustrations of the various annoyances and humiliations I go through as a result of my deafness.

Going out for coffee included:

  • Being glared at by the bus driver when I didn’t understand what he was telling me as I paid my fee.
  • A barista trying to hold back laughter when she asked me to repeat my order and I thought she was complimenting my hat.
  • Accidentally grabbing someone else’s drink because I couldn’t hear the barista say whose it was.
  • Standing right next to a lady at the bus stop and not realizing she had a fierce cough and a prescription bag from Walgreen’s.

Going to the blood lab included:

  • Having a receptionist wave her arms to get my attention from the waiting area, causing others to openly stare at me.
  • Having the receptionist frown and sigh when I didn’t understand a question, then refuse to repeat it.
  • Having a lab technician scare me by yanking my shoulder (causing me to audibly gasp) because I walked to the wrong draw booth.

Going for coffee and to the library the next day included:

  • Texting a Lyft driver to let them know I’m deaf, but having them forget, then roll their eyes, shake their head, and sigh when I remind them in the car I can’t understand what they’re saying.
  • Having the barista laugh when I say I’m deaf because they think I’m joking.
  • Not understanding the barista when they asked if the drink was “for here” or “to go,” then getting the wrong drink order.
  • Walking past the librarian and not realizing they were trying to let me know the library closes in five minutes (more waved hands, more open stares).

Being home alone included:

  • Leaving the garbage disposal on for eight hours.
  • Having a delivery man knocking on the door for who knows how long while I danced and sang in full view of the door window.
  • Being afraid to set the house alarm because I wouldn’t know if I set it off by accident.
  • Accidentally sitting on the remote and turning up the TV volume to the highest level without noticing.
  • Being unable to sleep because my tinnitus made me think people were moving around in the house at midnight.

I lost the confidence I was so confident I would have. I’ve come to learn that being deaf, for me, is a series of humiliating events. Have the blushes burned permanently onto my cheeks yet? There must have been a hundred times that I’ve told others with disabilities, especially loved ones with social anxieties, to not feel humiliated when things go wrong in public. I was a huge extrovert before my deafness, so that was easy for me to say — just laugh at yourself and move on. (I apologize to those who I told to simply not be humiliated, as if it’s the easiest thing to do.) A major problem with disabilities — mental and physical — is having this crippling Screen Shot 2017-07-12 at 8.45.47 PM(excuse the bad pun) feeling of vulnerability, the feeling of being at the mercy of whoever you’re interacting with. When you make a mistake in the public sphere, it deeply injures because people with disabilities sometimes feel that they’re feeding into the unfortunate thought process of ableists* (see sidebar) who believe the disabled community to be inferior. And to rub salt in the wound, those with disabilities find themselves apologizing profusely for “messing up,” despite the disability not being their fault.

Moving from extroversion to an extreme fear of social situations has been tough. I used to stay in my work office at college until late at night simply so I would always be surrounded by friends. Now, I only have two friends in the Bay outside of my family and Kristina — both living 45+ minutes away. So, when my parents are at work and Kristina is in school at Hawaii, things get pretty lonely. This is embarrassing to admit, but I’ve actually cried in the middle of a cafe out of jealousy when I’ve seen groups of friends chatting with each other over coffee. I would give anything to have a random person sit next to me and try to make conversation with me. Even if they were trying to evangelize for the Flying Spaghetti Monster or something. I just want someone to take that first step because I can’t help feeling like a burden when I initiate conversation with others.

Ah, communication! That’s the key topic with deafness. I communicate best through writing and text. My family uses speech-to-text (via the iPhone Notes app or Google Voice). Many people seem surprised when they learn I don’t use ASL (American sign language). I know a few signs to help me order coffee, but between the transplant medications making my brain foggy and my natural lack of language-learning skills, ASL just hasn’t been something I’ve pursued this past year. I would like to one day just so I could communicate with other HoH/deaf people (I’m a bit of an outsider in the deaf community for not knowing how to sign). Just not there yet. As for lip reading, it really isn’t as easy as you might think. Only about 30% of speech is visible on the lips, so trying to follow lip reading beyond simple questions or statements is like mentally working on a puzzle the entire conversation. By the time I’ve completed the puzzle of one sentence, the speaker is two sentences ahead. It’s exhausting! That’s when I pull out my phone and ask them to communicate through text (and that’s also when people normally give up on even trying to talk to me).

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A pin I wear in public. I am usually humorous about my deafness. That doesn’t mean all people who are deaf are open to joking about it, though! It’s best not to assume.

I try not to be sore towards others when they don’t meet me halfway or don’t take my deafness into consideration. It’s not like I knew how to interact with people who were deaf back before I was deaf. As for those who forget I’m deaf: I tell people even I forget that I’m deaf at times — often turning up the TV volume or reaching for headphones. But it is a more sensitive topic for many, and not easily laughed off. There are people who are so fed up with being mistreated by the hearing society that they refuse to befriend anyone outside of the deaf community. And there are people who see more tragedy than pride in their deafness (usually those who were not born deaf). Just imagine waking up to not being able to hear your loved ones or your favorite music one day. Beethoven wrote a heart-wrenching letter about the effect deafness had on his life — I can’t put it better than him. Click here to read it.

While many have pride in being deaf, I haven’t (yet) met any who say life as a deaf person is easy. That’s reflected in statistics: People with major hearing loss are twice as likely to suffer from mental health issues than the average population because of the difficulties they face, and they have less access to mental healthcare because of communication barriers.

You might not run into a person who is hard of hearing or deaf for this entire year. Maybe for many years. But if/when you do meet one, try to take into consideration that they have to deal with a multitude of social challenges nearly every day and that you extending a hand of helpfulness could bring a lot of light to their life. Check my blog a few days from now to get tips on how to be that light.


P.S. I had a new round of lung function tests today and I’m at 78% FEV1! That’s a 5% improvement from last month’s lung function, and only 2% away from a normal person’s lung function. A bronchoscopy procedure is set for tomorrow!

 

Becoming Deaf.

A bit of background on how I lost my hearing.

You know those toy microphones? The ones that make your voice sound kinda echo-y and twing-y? That’s how Kristina’s voice sounded the day my hearing began to change, in March 2016.

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Ironic that microphones are supposed to amplify sound. Instead, this marked the erasure of my hearing.

Within a few days, all female voices and most music sounded that way. One day, I woke up from my phone alarm going off. But it was the vibration that woke me. I couldn’t hear the sound at all, even when I pressed the speaker to my ear. I walked to class that morning and an ambulance sped past with sirens on. No sound, only pain in my eardrum. I could hear low pitches, but they were a bit muted, like I was listening to them underwater. I turned around and went back to my dorm to research what could be causing the problem. I didn’t think my hearing would be gone for good. I was annoyed, but relatively calm.

I actually lost the hearing in my right ear in 2010 from an antibiotic I was on. I had gone to school and realized I couldn’t understand what people were saying. Plugged my left ear with my finger and it was totally silent. Plugged my right ear and I could hear through the left. It was a frightening day, and one I remember every detail of because it was so life-altering. I adjusted in time though, and most people didn’t even know I was half-deaf. I protected my hearing extra carefully because of that though, never turning my music too high and blocking my left ear around loud sounds. I was afraid of losing the rest of my hearing, but at the same time, I didn’t really think it would happen. I guess that’s why I didn’t freak out too badly when my left ear started getting weird. The “universe” didn’t hate me that badly, right?

So, six years later, I was in the audiologist office and feeling pretty sure I just had water stuck in my ear or something despite not hearing well for about a month by then. I was just hoping the appointment would pass quickly – that they would drain the water out – so I could get back to the newsroom for a meeting I had. I didn’t make it to the meeting. Instead, I was told my hearing wasn’t going to return and left to sit in a hall with Kristina for about an hour to process that sentence. How do you process that? I’m not sure. I expected my family and Kristina to process it better than me. I demanded that they act more sad and afraid than they were, to stop telling me it would be okay. I demanded that they feel strongly and negatively, despite me feeling numb.

The doctors had put me on steroids about a week earlier, hoping that could restore my hearing if the loss was related to inflammation in the ear. Steroids do indeed give you “roid rage,” which took away the numb feeling soon enough. I became furious. When I got back to my dorm that night, I screamed, “THIS IS SO UNFAIR! WHY ARE YOU DOING THIS TO ME?” I knocked my shins against my coffee table and threw around some papers and plastic bottles. I’m not usually one for whining about the universe being unfair, but I was in that moment. I didn’t know how to process the idea of a new disability when I worked so hard already to succeed in life, in spite of my lung disease and mental health issues. By now, my lungs were getting steadily worse along with my anxiety and depression. The only things that made me happy in those days were my work as a journalist and editor, and my relationships. Now I couldn’t interview, I couldn’t be an effective leader, and I could hardly communicate with my friends or Kristina. I didn’t even have music to turn to for comfort. It was the perfect recipe to ruin me. So many tears were shed and I was so broken.

(This is the part where I applaud Kristina for being the perfect angel she is: sticking by my side and keeping me in the fight. If you see her, give her a hug, because she’s been through a war she could have left at any moment – I even told her she could. She never did.)

I still had some residual hearing back then, but I could only hear the lowest of sounds. Once my lungs got really sick, the doctors had to put me back on that antibiotic from 2010, which slowly stole the rest of my hearing over a three-month period. It seemed like every day there would be one less sound I would hear. I began to cherish the small sounds I could hear (cars engines, bass, thunder), while having constant anxiety that they could no longer exist to me the next day. They’re all gone now — I live today completely deaf, outside of tinnitus (ringing in the ears).

It’s still a mystery why my left ear first began to lose its hearing, although my doctors have had a few theories. We didn’t really see the point in pursuing answers.

I’m set to get cochlear implants in a surgery on August 31st. With implants, I could hear again! Others try different methods to restore their hearing. If you’re interested in that, I suggest checking out the blog My Hearing Loss Story, a fascinating read!


This is a three-part blog series about deafness. Consider this post the boring context-setting history of how I came to be in this position. In a couple days, I will post a blog about what it’s like to be deaf. It’s not all bad and there are a lot of misconceptions about what it’s like to not hear. A couple days later, I have a post of tips on how to interact with deaf people. Hope you tune in for both!

The Sound List

I’m in the car on a long drive home from a day spent in Monterey. My sister is driving, singing along to the radio. Of course, I can’t hear any of it. But she looks so happy. My family doesn’t have the most talented singers, but we all love singing anyway. Even as a deaf person, singing brings me joy. So it hurts to realize I’m slowly forgetting how many of my favorite songs go. I can’t help but feel regret. The moment I learned I was becoming deaf, I should have worked to etch every single musical note into my mind. But the past is past.

It’s bittersweet nostalgia, pondering my favorite sounds and what they mean to me. Many of these sounds I took for granted, things I didn’t realize I had found beauty in. Threading along that line of thought, I have begun to appreciate my sight so much more. The magnificence of nature, communication using sight as a tool, the things usually unnoticed, the mind-boggling concept of everything seen being a reflection/manipulation of light.

I share my list of favorite sounds to encourage you to think about your own favorite “sensory triggers.” Close your eyes and think: If I could no longer hear, see, feel, smell, or taste, what would I miss most? Why? Then, maybe you can appreciate them even more than you did before, and life could be that much more beautiful.

My sound list:
-The patter of rain on rooftops.
-Coffee brewing and bacon spitting, birds chirping — sounds of a good start to the day.
-Children playing and laughing.
-Adagio for Strings Op. 11 and Princess Leia’s theme… and a lot, lot more music.
-My family’s familiar voices from the next room, the sound of home.
-The rustling of paper and scratching of pens.
-The voice of Bob Ross in The Joy of Painting.
-The chatter of people greeting each other at church.
-The bubbles and filters in huge aquarium tanks.
-Cats meowing.
-Star Wars sound effects.
-The snipping of scissors and buzzing of razors during haircuts.
-Thunder, especially when it rumbles.
-Kristina’s voice, of course.

The unfairness of being unfair

Beginning in high school, when the severity of my disease clashed terribly with my immaturity, I felt entitled to anger. I wanted to focus on how unfair my disease was, and the well-intentioned attempts by others to lighten my mood or find common ground mostly served to fuel that anger: “Oh, I have asthma so I know what it’s like!” “You’re lucky you get to eat anything you want without gaining weight.” “You’re lucky you get to skip school so much.” “I had a relative who had CF. They died.” I also grappled with my desire to be treated “normal,” while simultaneously bemoaning that I had to keep pace with everyone else in school during my battles with this disease. This anger and self-pity resulted in me viewing people’s personal problems as trivial in comparison to mine, and I often lashed out at others, especially my family. My anger ruined relationships, my self-esteem, and my overall attitude towards life and others.

This pattern of destruction still lingers, but I think I’ve generally improved my attitude. I’ve come to realize that I’d been expecting people to actually know what I go through, and that I thought people’s words were deliberately offensive when they were really more often just built on misunderstanding. Cystic fibrosis doesn’t get much attention outside of maybe a couple biology class lessons about genetics. And unless a person with CF is very open about their life, many of their friends think life with cystic fibrosis is nothing more than the difficulty to breathe, lots of pills, and the occasional hospitalization. As I’ve mentioned in previous posts, a lot of cystic fibrosis aspects are viewed as too embarrassing to be public about. To those who aren’t close to someone with the disease, “cystic fibrosis” is often nothing more than a couple unintelligible words.

Honestly, a huge factor in me opening up about my disease post-high school was the need to let people know I needed help, especially when I was living on my own in college. When merely talking or walking exhausts me, it becomes a bit difficult to hide how big of a role the disease plays in my life. So I had to wrestle back my pride over normality to allow people to help me out (even more so recently when I became deaf and oxygen-dependent). Since the time I became more open about things, I haven’t had as many people say the things from my first paragraph. People now seem to understand the sensitivity of things when speaking with me. I’m not saying every person with CF should be open about their disease. You deserve privacy. But the very noticeable difference makes me realize how much of the insensitivity was based off people not understanding my situation rather than irrational maliciousness.*** I deserve privacy, but I shouldn’t let that privacy be the source of anger directed towards society. I think it’s okay to gently inform people that what they’re saying is insensitive — it could help them and others in the future — but viciously (or even passive aggressively) attacking only ever led to more anger.

These realizations also helped me to feel more sympathy for others. I don’t know all of your problems and I definitely can’t measure the emotional/physical toll they have on you. I don’t know what it’s like to be poor, I don’t know what it’s like to have the flu without ever being sick before, I don’t know what it’s like to feel oppressed, I don’t know what it’s like to be bipolar, I don’t know what it’s like to not have awesome parents, etc. Everyone has problems and everyone has different perspectives. I don’t want to focus on who has the worst problems (which is really perspective-based). I want to focus on how we can love and help each other.

I’m partly writing this as a public pledge. I welcome you all to remind me of these words if I stray, even if within these blog posts or in private discussions. My new year’s resolution, starting a month early: be more sensitive to how my words affect others, don’t let anger fester over misunderstanding, and treat other people’s problems with respect and love.

***I’m not saying this is always the case. Some people just like to hurt others. That sucks.