Feeling Normal and Better Than Normal

Feeling Normal and Better Than Normal

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

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

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

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

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

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

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

Recap Time!

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

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

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

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

10 Things I’ve Learned About My Faith This Year

10 Things I’ve Learned About My Faith This Year

It’s been an eventful year: a time of the greatest happiness, greatest sorrow, greatest trials, and greatest transformation.

We had a speaker at Collegiate Week talk about Exodus: How God could have delivered the Israelites home with ease, but he instead gave them learning opportunities. They were painful at times, but Israel was stronger as a result. I might have just been in the desert for a couple weeks instead of 40 years (har har) but this past year as a whole had a plethora of growing opportunities.

Here are 10 things I’ve learned about my walk with God in the past year:

1. Biblical manhood doesn’t fit perfectly into secular/Western ideas of masculinity.

Until last year, I felt weak. I cry a lot, I’m not muscular, I can’t kill bugs without feeling guilty, I don’t watch or play sports, and don’t drink or curse. I’ve always felt “soft” because a lot of society thinks men should be physically tough and detached from their mushy feelings. But as I’ve come to care more and more for Kristina, I started researching concepts of Biblical manhood, because I want to be the best man possible for her.

The Bible describes the toughest man (Jesus) weeping from the death of a friend and the expectation of physical pain. It describes the need for kings to be disciplined, humble, and respectful. The need for a man to treat his wife and family as he treats the church (keywords: rejoicing in her, love, selflessly). The need for a man to turn away from perverse talk, adultery, and intoxication. The need for a man to not belittle, slander, or give in to violence. The need for a man to value wisdom over riches. The need for a man to be kind.

The man described in the Bible is the one I want to strive to be. I don’t need to be macho like Clint Eastwood or Ryan Gosling (though I’m not opposed to looking as good as them). I do need to be a follower of Christ.

Scripture: “Blessed is the man who walks not in the counsel of the wicked, nor stands in the way of sinners, nor sits in the seat of scoffers; but his delight is in the law of the Lord, and on his law he meditates day and night.” Psalms 1:1-2.
Also: Proverbs (the advice King David gives to Solomon on how to be a man), 1 and 2 Kings, Ephesians 5:1-33.

2. Joy is not necessarily happiness.

I’ve covered this many times in my blog. “Adamantium Joy” does not mean “Unbreakable Happiness.” I get very down sometimes. Joy, in the Christian meaning, is a confidence in God that produces comfort and love. It’s knowing that you are satisfied with Him, and striving to make an even deeper connection.

As a matter of fact, joy can be incredibly painful. It requires a pruning of the Vine: the pruning of temptations, habits, some relationships. Things that give us pleasure, but hurt our soul.

Scripture: “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.” James 1:2-3.
Also: John 15:1-8 (the Vine)

3. Submitting to “The Plan” is simultaneously the hardest yet most comforting thing.

The Plan I’m referring to, capitalized for dramatic effect, is God’s plan for your life. His Will. The Plan often takes sacrifice, stepping out of your comfort zone, and taking risks that seem irrational.

Dropping everything in Hawaii and pursuing a transplant that wasn’t guaranteed… That was following The Plan. What should have been the scariest thing I’ve ever undergone, was instead a period of the deepest calm I’ve experienced. Because I had faith God would pull me through. While transplant is difficult, I’m healthier than I’ve been in a decade. God does give you more than you can handle… But you can handle it with His help. Rely on Him.

Scripture: “Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.” Proverbs 3:5-6.
Also: 2 Peter 3:9, Proverbs 16:4, Exodus

4. The power of prayer: Three powers.

Post a status and say you need prayer. Many will answer and say they are praying. But how many actually pray? Finding out that a friend has diligently prayed for you is just, wow. Praying for friends shows that the relationship goes beyond this earth, that the love was strong enough to bring genuine worry or praise before the throne multiple times.

I’ve also been pleasantly surprised to have so many of my atheist or agnostic friends say they’ve prayed for me — their first prayer, or the first in many years. That’s so touching to me and has been a cause of happy tears on many occasions. They don’t know God, but it’s beautiful to me that they so strongly hope that someone will answer their prayers anyway.

Lastly, I discovered the power prayer (or God, technically) has over my anxiety. When I feel the panic (from my panic disorder) rising in my throat, I turn to prayer. Where it used to take medication to bring down my panic attacks, I now just need to talk to God. It works!

Scripture: “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7.
Also: James 5:14-16, Mark 11:24, Psalm 107:28-30

5. Children are something to cherish.

If you know me, you know I love to pretend I don’t like children (shout out to ‘Sally’!). Truth is, I think they’re… cool, I guess. I think we have a lot to learn from them, and Scripture says as much. Their childlike faith extends to humans as well as God: it is pure and can move mountains.

The aforementioned ‘Sally,’ also known as Sadie, is the kid-o of my pastor. She’s prayed for me to come home to Hawaii and to be healthy again. And I dunno, to her, it’s not just words. She believes in the power of prayer more than most. And I think her belief in it is how it should be: Pray big or go home, pray specifically and pray with unshakeable faith. Don’t tell Sally, but I’ve wiped tears away when she isn’t looking because I’m so touched by her caring.

Children also make me feel better about my appearance. I get a lot of unfriendly, scared, rude stares from older people because of my mask or from back when I rolled oxygen tanks around. But kids always look at me in fascination, like I’m some kind of superhero. I dig it.

Scripture: “And he said: ’Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven.” Matthew 18:3-4.
Also: Psalm 127:3-5, Matthew 21:15-16, Psalm 8:2, Matthew 18:5-6.

6. We need to be better stewards of the Earth.

I’m not even making a political statement. It’s a Christian statement. I’ve come to appreciate nature so much more thanks to my deafness (sight matters more) and my new sense for adventure. But it’s really disturbing to see how much litter is sprawled across the landscape and equally distressing to see, smell, and breathe in the smog caused by machinery (including cars).

You don’t have to believe in climate change. You just need to believe that God’s creation should be cared for respectfully. After all, it’s His property and He made it beautiful for a reason.

Scripture: “A Psalm of David. The earth is the Lord’s and the fullness thereof, the world and those who dwell therein.” Psalm 24:1.
Also: Genesis 2:15, Revelation 11:18.

7. Sabbath is overlooked, but so important to our spirituality.

It’s probably the least talked-about commandment. Many view the walk of faith as one that is as active as possible. But even God rested after His creation. It’s not just a day of physical rest, though. It’s holy and should be used to connect spiritually with God. Don’t get too busy with your life that you can’t hear God over the chaos. I’ve learned to stop just talking to God, and instead sit and listen (much easier when deaf, ironically). Like a good, healthy friendship, our relationship with God requires selfless listening if we want it to be intimate. We also need to rest to keep ourselves healthy, which is covered in my next point.

Scripture: “So then, there remains a Sabbath rest for the people of God, for whoever has entered God’s rest has also rested from his works as God did from his.” Hebrews 4:9-10.
Also: Exodus 20:8-11, Genesis 2:3, Ezekiel 20:12.

8. Your body is a temple. Keep it clean.

Physical health does matter for a Christian. Don’t let your walk be disrupted by health problems you could have avoided. Imagine being called to a mission field overseas but finding yourself too unhealthy to fly because your lungs are damaged from smoking too much. Our body is an instrument for His Will, and so we should be in the best health possible if we can help it.

Scripture: “So whatever you eat or drink or whatever you do, do it all for the glory of God.” 1 Corinthians 10:31
Also: 1 Corinthians 6:19-20, Romans 12:1-2, 1 Corinthians 3:16-17.

9. Envy leads to demoralization.

Many use envy as a motivator to push themselves harder. But it can be very destructive as well, and can even demotivate. Before this year, I envied people so much for being able to breathe easily. I kept saying over and over in my head that, “I want to be normal, this isn’t fair.” Time that could have been spent at the gym or doing extra treatments was instead spent focusing on fuming over the situation. I would literally sit there and do nothing but think about how much my life sucked.

When I realized my journey was my own and shouldn’t be compared to others, I worked much harder. I always knew envy could lead to destructive behaviors towards others, but I didn’t realize how much harm it was doing me.

Scripture: “For anger slays the foolish man, And jealousy kills the simple.” Job 5:2
Also: Proverbs 14:30, Proverbs 27:4, James 3:14-16.

10. The Plan is ice to God, liquid to us.

God already knows the full Plan for us. But from our perspective (seeing bits and pieces at a time), it is ever-flowing and bending. Many think The Plan is just one statement/goal: “You should become a journalist.” And they get stuck on that one thing and feel like they either misunderstood or are failing God if they change goals.

In reality, The Plan is supposed to stretch over your whole life. It might not be just, “You should become a journalist.” It might be, “You should become a journalist, then take a break to experience deafness and transplant, then become a blogger, then write a book, then (seminary? become a teacher? back to journalism? …”). If you’ve prayed about it and feel called, go for it. Don’t get stuck on one idea when God has a whole bag of ideas for you.

Click here to watch one of my favorite scenes from Prince of Egypt for a more entertaining explanation of The Plan (we are a single thread in a tapestry).

Scripture: “The heart of man plans his way, but the Lord establishes his steps.” Proverbs 16:9.
Also:Jeremiah 29:11, Ecclesiastes 3:1-22, Jeremiah 1:5, Psalm 32:8.

Doing Better Than Fine

Doing Better Than Fine

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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A Better Cure

A Better Cure

If the cystic fibrosis community lived in one place, the streets would be filled with dancing. Patients and their families are jubilant at the news of early success in trials for multiple potentially life-saving drugs — almost-cures. Alongside thoughts of joy for my friends are thoughts of “what if.”

What if I had held out just a little longer on my old lungs? Would I have gotten an almost-cure?

It’s hard not to think these things.

A close friend told me that my year-long ordeal extinguished their faith in God. They couldn’t make sense of why I went through so much misery yet continue to praise God. Why cling to the one who could have intervened but supposedly didn’t?

I think of biblical Job in all his despair, being told to curse God and die. To give up. Job recognized God as his source of strength and it is because he clung to Him that he eventually was given an even better life than what he had before. Near the end of the Book of Job, he says to God, “My ears had heard of you, but now my eyes have seen you.” (Job 42:5) The true treasure wasn’t the earthly things God gave him, but the idea that he now knew Him. He had an experience that, while terrible, gave him an understanding of God beyond what writings and traditions had offered.

See, if I gave up on God because of my hardships, I really have no doubt that I wouldn’t be here today. It’s a theological myth that “God never gives you more than you can handle.” There are things we can only handle with His help. In the days before my ICU meltdown last summer, I’d nearly given up. The strength I’ve since drawn from prayer and seeing His plan for me unfold step-by-step — a million “coincidences” that stacked on each other and saved me — is inexplicable. And now, I see that God did intervene.

Maybe there’s a cure in the near future. But I saw those CT scans: cavities, literal holes in my lungs. Irreversible scarring. I saw photos of those lungs when they were removed from my body: ravaged, shredded. The damage was done and a cure would not have undone it. Even if the disease was halted, I might have lived longer, but I probably have still been so, so weak and sick. For the rest of my life. That’s no way to live.

Why did God allow the damage to happen in the first place despite my faith? Because I didn’t understand faith. We have this fairytale belief that we can live lazily and expect God to reward us, so long as we pray. No, God wants us to meet Him halfway. He wants us to work for the prayer. While my mom cried at night during her prayers for me, I was neglecting my treatments. God gave me so many chances, so many warnings. But I fell into my bad habits time and time again. I was responsible for my sickness, not God.*

God is responsible for the new life I’ve been given. I shed so many tears over cystic fibrosis. I still cry just as much, but the tears come from happiness. I have never been so happy, even despite my deafness (which hopefully will soon be fixed by cochlear implants). I was in so much pain with cystic fibrosis. More than I even realized. It wasn’t until I tasted what it’s like to have healthy lungs that I recognized how much I’d been missing out on. I told my mom the other day that even if I were to die tomorrow, the transplant was worth it. I was so tired. Now I’m living.

I used to tell everyone that I was 100% confident a cure for cystic fibrosis would come in my lifetime. Maybe a cure will come, it just won’t be for me. But I also feel that I received my own special cure. That while transplant is an illness of sorts, it has nothing on cystic fibrosis. My old English teacher, Mr. Schick, emailed me and asked if I “beat CF.” After chewing on that question for about a week, I feel like I can say, “Yes.” I didn’t just survive. I feel victorious.

I dove into this situation confident that I would have a spiritual transformation. I received physical transformation as well. God did save me. I’d heard of God, but now I’ve seen Him.

*Note: I am not saying every person is responsible for their own sickness. Just in my situation, yes, I claim responsibility. I knew the consequences of inaction in taking care of myself, yet I proceeded.

Tips For Interacting With Deaf and Hard-of-Hearing

Tips For Interacting With Deaf and Hard-of-Hearing

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

Breaking the Silence

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).

Screen Shot 2017-07-12 at 8.17.22 PM
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.

Becoming Deaf.

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!