Random Late Night Thoughts- On Lung Transplants and Perspective

On Goals and Motivation:  The beautiful thing about goals is that you can always achieve them and make new ones, the possibilities are endless, and you have a lifetime to keep going.  When I was a kid, I read this book about this really old man who decided to go to school and teach himself how to read.  It was really inspiring.  He could’ve decided to stay home and been embarrassed or made himself sick with worry on what others would think of him.  I think a lot on our battle with these inner demons and realize that at the end of the day, our biggest challenge in any goal is overcoming our own mentality and insecurities.  They could be something as apparent as being in a wheelchair or having a stutter, they could also be secrets of our past that we’ve buried deep but still influence our daily thought process, and seep into our choices and actions in life like poison.

Goals can be big or small.

My smaller goals lately have been mostly to aim at realism.  I want to make goals I can achieve more immediately- cooking new kinds of food, learning a new language, focusing on building my mentality and body.  All of these are goals as long as you chip at it each day and work towards it, they aren’t less valuable or successful than typical dreams like becoming rich or becoming a movie star.  The hugest part of reshaping my mentality the past recent years was to becomes strong enough to go through the lung transplant evaluations that I knew were leading down to a path of not a maybe, but an eventually.  I had many meltdowns at night and at the hospitals because the fear was always hanging over me, my anxiety became so bad I freaked out at the very idea of sitting in someone else’s car or trying to fall asleep.  It felt like the world was weighing down on me when anyone even tried to make me talk about it:  because I could get away with it sometimes, I wanted to shove the parts of me that was ill away and try to carry on looking fine and dandy and blend in with the “norm”.  I was determined to live the life of a regular kid, to worry about friends, boys, and all the petty drama that came with it, handing my paper in on time, getting a job.

I need to take a moment now and appreciate myself and the fact that I went through that and got through it in 2017.  I don’t often reflect on how far I come, I usually focus on what didn’t work out.

Recently, one of my goals was to go through Harry Potter World in a wheelchair for the first time, and not break down.  Check.  Huge win for me, even though it’s not the same as everyone clapping and cheering for you on stage or something like that.

When I think of this and all that I went through, I almost want to laugh at how petty everything else compares in life:  when I get frustrated or disappointed with people, stressed over things I don’t have, and most of all, finding out how entitled and weird people are out there that you come across at your job.  I remember being annoyed and complaining about it, but the truth was I felt happy.  Happy that today, I got to be “normal” and complain about petty things like other people who don’t really matter in your life anyway.  It’s just noise.  Letting things get to you and affect you negatively is draining- you gotta choose what is important and worth being stressed over. This is something my dad has constantly reminded me growing up about not being too sensitive or upset over everything.

There are always going to be situations and people who suck.  You can’t go through life only meeting nice and good people, never getting hurt – and I don’t mean just by strangers or acquaintances, but the people closest to you sometimes – yes, your friends, your family.  But that’s how you learn and grow each time.  Who other people are, what you can reasonably expect, how you can deal with the situation better, how you yourself can be better.

I had an epiphany recently, and that was the realization of just how low my self confidence has been.  I always knew I was shy and reluctant to open up to others, but I was thinking about how I subconsciously approached my friendships I’ve had in a way as if they were not only valuable to me, but that I owed them the world for taking the pity and time to be my friend at all.  As if I brought nothing to the friendship, and had to spend the rest of my life trying to prove that I am worthy of being a friend.  I tried to be more extroverted, bubbly, happy, to smile and be more fun.  To go out of my way when I could for them so they wouldn’t see my flaws.  And when it didn’t work out with the friendship, it cut me deep. To the core.  I would be resentful with them, disappointed that they must’ve seen that I didn’t measure up and was too much of a burden.

  1. There is a difference between understanding who is precious in your life, but also understanding your self-worth and all that you contribute with your presence and actions.  As from the movie “Wonder”, it’s okay if you were born to be different and to stand out.  Embrace it.  You are worthy of friendships, and as long as you try your best and care for them, they are lucky to have you.
  2. True confidence comes from within. Today I came to the revelation about how regular people can walk 5-10 times more than I can at 2-5 times the speed and still don’t get tired…. how do you not feel fucking invincible??  I would.  My second revelation… if you can feel at peace and accepting about yourself even as you sit in a wheelchair with no make up on as a bunch of people you know stare at you and question you, then you’re still fucking invincible. (I haven’t reached this point of invincibility yet ._.;)
  3.   I used to think of a strong mind as a fortress, one that can protect itself from negativity, and barricade positive vibes within.  But now I think of a strong mind more as a temple- why? Let the negativity enter, sit there even.  And STILL be able to have your positive vibes rise up higher than all the noise- this is what constitutes a strong mind.

“All that shit will feel petty when you feel pretty” -Dumbfoundead

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Storytime: That Time I Got Robbed and Other Musings on Gratitude and Empathy

~StoryTime~

There was this one time when my parents and I were on vacation in Canada and my mom and I had gotten into a fight the previous night; I was about maybe twelve years old.   The next morning, we ate at the hotel complimentary breakfast with the expected aftermath of awkwardness in the air- I kept my eyes lowered to shield my puffy red eyes under my hat.  There weren’t many other people around, but I remember seeing two tanned men sitting near us at the next table.  I was in a foul mood, angry with the world and still upset at something my mom had said earlier; my feeling ashamed reflected clearly in my flushed face.

I was so lost in my own world of sulky thoughts that I only barely took notice that my mom had left the table to get more food.  Soon after, my dad also got up to head to an aisle leading to the men’s room, leaving me alone.  The next minute, I was whipped out of my thoughts by a man who approached me, pointing furiously towards the direction my dad had left in and jabbering in a foreign language.  His panic was infectious.  The first thing that came to my mind was that something had happened to my dad: he had a heart attack, he had passed out, there was a fire.  I hesitated and stood up as the man bolted off – confused, I wondered if I should follow him or call the police.

Next thing was my mom’s alarmed voice; she had come back and immediately exclaimed, “Where’s my bag?!”

I glanced around to the chairs around me, and only saw mine.  That was the moment  I realized that I had been hoodwinked.  The men who were sitting near us were gone.  The police arrived and questioned us, and after watching the security footage, confirmed that the two men had dashed out the backdoor.  The police told us that it was one of a few cases that had happened recently in the neighborhood hotels in the same exact fashion.  The next hour was filled with my mom calling various places to cancel her credit card accounts, phone accounts, and anything else the police advised her to do.  My mom’s camera, phone, and unfortunately, more than half a thousand dollars cash had been in her favorite bag.  She said she had forgotten to remove all the cash since her recent trip to Taiwan where she wanted to exchange some of it for Taiwanese money.

The shock that had hit all of us that early afternoon had us immediately forget, or rather, let go of any ill feelings harbored towards each other.  I remember feeling a mixture of emotions.  I felt guilty that I had not watched our things more carefully, that I had so naively been fooled by that guy, who must’ve distracted me to one side so that his accomplice could grab my mom’s bag to the other side of me.  I felt a bit regretful that so much money had been lost, especially since my younger parents worked hard to save up money.

I also felt tremendous relief that nothing in fact, had happened to my dad; he was okay.  My mom was okay, I was okay, we were all okay.  Nobody had held me at gunpoint or knifepoint threatening to kill us if we hadn’t handed over our possessions.

I also felt the weight of grudges just a couple hours ago melt into incredible gratitude, realizing by comparison the full pettiness of my sulky world.  One argument was a bad grain of sand in the spectrum of our lives.  Even though I don’t count myself as particularly religious, I remembered thinking that this incident must have been God’s reminder to me to wake up and understand that much worse things could happen at any given time.

We really tend to see what we don’t have, and what others do have.  Even on days where I’m in tremendous pain physically or emotionally, or my car broke down,  I would just think, if only I didn’t have to deal with this shit.  How much better the day would be if I just wasn’t in pain, if the car just worked and I could get to my friend or my groceries.  That’s how we see that the ordinary, “boring” events are actually extraordinary.

Today, some tragedy could’ve happened that left my family homeless.  Today, I could be so destitute that I don’t have enough money to buy dinner.  Today, I could’ve lost a loved one.  Today, I could’ve found out someone I loved didn’t love me back anymore.  Today, I could be feeling so depressed that I want to kill myself.  Today, I could be lying in the hospital again, just wishing that I could sleep in my own bed and get a hot shower.

Today, none of those things happened, and I did get to feed myself, sleep in my own bed, and take a hot shower.

I was in the car the other day and musing over the whole “glass half full, glass half empty” cliche.  Maybe we’re missing the point when we look at it that way.  Maybe the truth to finding Zen and acceptance of everything around us, including the shitty parts, is to see the glass itself.  That the glass exists at all.  That we have a glass.  That we have water at all.  It could all so easily be nothing, just empty space floating into more nothingness.


-Just a passing thought about how to find happiness and peace since that is something I’ve struggled with my whole life.

Reminder though, that even though we should strive to be more appreciative and notice all that we do have, it’s still okay to let yourself feel the sad parts too.  We’re wrapped up in a society that expects us to feel fine all the time or try to get us there (“Feel better!” “You’ll be okay” “I’m sorry” other crap etc.).  Is that true healing?  No.  You have to walk through the tunnel to get to the other side, there is no shortcut.  You can’t magically Apparate or sprout wings over the tunnel.  What we can do for each other?  For true empathy, be there for one another.  Rather than a “Feel better”, I want to live in a society where we hold each other’s hand.  We offer an embrace, we tell them yes, what they’re going through sucks, but I’m here for you.  I will walk with you through the tunnel.  You’re not alone.

There’s a difference between finding pleasure in sulking in misery, and brushing off any pain like it’s nothing.  Validation, entitlement, to your feelings… I guess it’s a bit of a fine line sometimes depending on perspective.  There’s a balance.

I’ll admit that this is one of my faults too.  I’m a hypocrite, because I have told people to “feel better” before.  Because when I feel their burden, I just can’t.  I can’t even handle my own burdens sometimes.  “Put the oxygen mask over yourself before helping others put their masks on” <— wise words of a flight attendant.  But I’m working on it, and I wish more people would just give more of a shit to be honest.


Today’s Obsessions (Music):

-Heaven by Julia Michaels

-Sacrifice  by Black Atlas & Jessie Reyez

-Wait by Maroon 5

Disney + Worries

So… my family is planning a trip to Harry Potter World and Disney and I’m simultaneously excited yet super anxious.

The biggest hurdle is that my therapist suggested that I start using a wheelchair of some sort so that I can avoid becoming exhausted to the point of major discomfort and fatigue, and tense muscles.  I had never considered using a wheelchair before, and the hypocrisy that is me, is that when I see other people in wheelchairs, I don’t think much of it, yet when I think of ME in it, I am riddled with a million feelings: perhaps

Shame, that I have to submit to a wheelchair and can’t make it on my own two legs,

Guilt, that I don’t really deserve to use a wheelchair and am a “fake” illness person (doesn’t help that tons of other people have doubted my illness over the years), and that my family will have an extra task to do in pushing me around,

Embarrassment when I have another extra thing to make me feel different, and perhaps

Relief and Hope too, that this might be much better of an arrangement for me energy-wise, if I could only wrap my head around accepting it.  The truth is, my whole life I’d lived in the mindset that my lungs were going to eventually heal and become “normal” when I reached adulthood aka college, yet I was slammed with the ugly reality when I switched over to an adult doctor, who told me I should be prepared for lung transplant evaluation instead.

My whole life, I’d been competing with people functioning at full capacity, when it was literally not possible.  And even after the sad realization, I could not bear to face the reality that it was, and continued to live in doubt and silence.

After a few years of therapy now, which I started on and off 3 years ago, I think I’m becoming better at shifting my perspective to a more positive one, but it’s still a really long and bumpy road.  I have to expect that most healthy people, especially ones at my age, will simply not get it, or even have the patience to try to get it, because they have their ableist privilege, and all I can do is control my own mentality.

The list could go on forever for all the rough moments in my life when other misguided people mistreated me and misunderstood me, believing I was taking advantage, or lying, “playing a victim”, or one thing or another, just because there was no visible evidence in their eyes.  And it caused me to continue to doubt my own capabilities and limits as well for a long time.  But now I realize that you do not let other people’s ignorance hurt your own knowledge and perseverance. You are not any less just because you were given less spoons.

I have to learn to forgive people and move on, because for a long time honestly, I’ve let myself get caught up in the unfairness of it all, and the rudeness of others causing me so much hurt and pain.  No more.