Tag: Deafness/Cochlears

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-sounding — my audiologist’s. Counting: “1, 2, 3, 4 …” I’m trying to keep chill. I don’t know why. Everyone in the room — me, 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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An Anniversary of Writing to You

Thoughts on writing and why I do it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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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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!

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.