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.

Advertisements

Acceptance in Mind, Heart, and Soul

I often find it difficult to understand how people have that kind of faith in God or a bigger picture.  I want to make sure I try to obtain that kind of peaceful acceptance in my heart, without stopping to fight for the way I want to live, my right to be who I want to be and who I am, and becoming complacent by giving it up to fate or that it’s “out of my hands” and “God’s will.”

I think the people in this world who are angry, hurt, and who struggle with depression and anxiety, see all the misery that is the world’s suffering, and we feel it more deeply, to a point where it is near unbearable levels.  That’s some of us fall prey to alcohol and drugs, anything at all to numb the pain, even if it ends in self destruction.

This week, I’ve started my four-day lung transplant evaluation tests at UPenn.  I’m 24 years old, and I’m somehow simultaneously used to but also feeling misplaced standing in the waiting room with the other 60+ year olds.  I was wheeled in a wheelchair for a 6 min walk test, and one of the technicians said to me, “You’re too young to be here.”  I just laugh it off and say it’s okay, I’m basically an old person.

I don’t fit in with peers in my age group.  I don’t know how to at least pretend I fit in, and chuckle lightheartedly at moments in life like just silly things with friends.  I might as well be socially the same as a hermit in the mountains, with a long beard in a dark stone cave.  I have to relearn it each time I try to really interact with civilization again.  I’m awkward.  No denying it haha.

Instead of wallowing and focusing on how pitiful I am in everything I’m going through/about to go through, I’m trying to focus on the positive: my inner strength, the inner strength of every journey and experience that’s made me who I am today.  My Asian heritage, I am an example of what immigrants go through, what it’s like to grow up and live in America.  My struggles and experiences as a woman, my eyes have opened up to the inequality and the things that are really not okay.   From how guys sometimes treat me, from the subtle to the obvious.  Being manipulated, getting hit on sexually, or finding out that a guy hooked up with your friend while pretending to go after you while you were ill.  All of that shit.  All of it.  #metoo.  I feel the weight of it all right now.  But I’m still standing here, because I’m empowered by the strength of the people around me.  We’re in this together, we’re fighters, and that’s what life is about too.

I have to find the strength to endure it all, and keep trying anyway, despite constant setbacks and constant misunderstandings and judgment by people who are blinded by their privilege.  I need to overcome my own judgment of me.  And I want them to want to be better versions of themselves, because I see the potential.  If I didn’t, I would have given up on myself a long time ago.

A Break Up

While I don’t claim to be perfect, in fact far from it, (read this post on Empathy, which makes me feel the burden of the world in addition to my own..), I refuse to lower my standards and expectations of the people I surround myself with.  Ever hear the philosophy that you are judged and influenced by the people you’re friends with?  That’s true.  More than ever.  I want you to at the very least, want to change for the better.  The beauty of never being able to reach perfection is that there is always, always, room for improvement and growth.  Don’t get me wrong – I don’t expect to surround myself with  “perfect” people- I expect us to grow together.  But what does one do when you actually feel like your own growth is stunted by others?  And if one is too “forgiving” or too accepting of the status quo, too content, too stagnant, how does anyone know how much more potential they can reach?  I’m dissatisfied because others are too complacent with themselves.

Then comes the frustration, but also the acceptance that we can’t force people to change if they don’t want to, as I am constantly reminded this past year.

I feel a bit like a failure, because regarding myself, I’m not sure I added much happiness or growth to anyone else’s life that I met this year – did I make a difference, a positive impact in their lives?  I don’t know, but I hope so.  Sometimes, we don’t always get to see the fruits of our labor and the ripple effect of the ripple we dropped in the water.

But at the end of the day, I’m burnt out, I gave it my all, and I have no regrets.  It started out good, but now I don’t know what the point of my presence is here anymore… It’s time to let go and break up.  At least for the time being.

I’ll be alone.  But I’ve felt alone for awhile now anyway.

The Onigiri

I don’t remember if I wrote about this before, but it’s my go-to story whenever a friend who’s having self-doubt or any other moments of apprehension talks to me.  It’s a story I tell myself once in awhile to remind myself of my worth, even if I don’t always see it.

When I was younger, my best friend got me into mangas, and my favorite was always Fruits Basket.  In one chapter, Kyo is this character who comes off angry but holds in a lot of pain and fear.  Tohru is the girl who looks at him in thought, and ponders, “Hm, maybe it’s on his back.”

The way Tohru sees the world is that every individual is an onigiri, and each contains a special ingredient.  However, the problem is that Kyo’s onigiri looks at everyone else’s, and is envious looking at the ingredients on their backs, whether it’s salmon, or tuna, or egg.  He can’t see his own.  He thinks he’s worth less because he can’t see his back.

Sometimes, pretty often actually, I find myself as Kyo, struggling to see what’s on my back.  I know some of you are thinking “please, I know what my special ingredient, I’m made of PRIME RIB, wagyu beef yo.”  And that’s great.  But a lot of us spend a lot of times staring at all the other onigiris’ backs and admiring their special ingredient.  So I’m here to tell you that you have something special on your back, and I see it.  You are made of worth, you were created unique, and everyone around you can see it even if people might not go out of their way to tell you or admit it to you.  I think we could help each other out by being the eyes for each other on what we can’t see.

Thoughts n Questions to Ponder

  1.  What are the main differences between pity, sympathy, and empathy?  Are there two different levels of empathy?  A.  Having gone through the same, or very similar experience where you understand deeply B.  Can understand as explained to you, as you willingly strive to seek out understanding of another’s experiences
  2. What determines what is art and what is not?  Is it enough that it makes one feel an emotion, or an opinion?    What about if something is crudely done in controversy? Perhaps this is how famous celebrities (Kim K, Andy Warhol, Trump, the Pepsi commercial) garner publicity knowingly and manipulatively
  3. Everything in life mainly revolves around the goal of Efficiency, which will lead to Effectiveness.  Example: Why Marie Kondo’s book on tidying and organizing became a bestseller as we have so much waste and crap in our houses.  It is how I learned to memorize my music with intent and away from the piano, more intensely in less time, but more mentally draining regardless.  Creative design should also focus on minimize waste, energy, time.  Should the same concept be applied for empathy?
    1. Things that are wasteful but shouldn’t be… 40% groceries wasted away in the average American household- why??
    2. Taco Bell sauce packets
    3. Throwing away or not having anywhere to place reusable teabags…

What are my strengths and current goals? Curiosity, focus, and intense determination

  1.  Korean / Spanish language, teaching Mandarin to my friend daily and weekly
  2.  Coding for Python
  3. Looking into animation (create short) practicing piano again and writing music (create a great piece)
  4. Empathy, Pondering, Philosophy
  5. Creating greater efficiency in waste, energy, time
    1. Re-organize lifestyle and bedroom
    2. Establish regime – wake up before 12pm, sleep at 2am, take morning/bedtime calcium supplements.  Stretches, drink 37oz liquids, work out, floss, mouthwash, skincare, haircare.
    3. “Is what I’m doing beneficial to me in the long run? Am I learning something right now productive?” –>  TEDtalks, cooking recipes (next up, ba wan), Lynda tutorials
    4. Be better at planning events
    5. Minimize sound pollution, food waste
    6. Develop photography portfolio so I can develop photoshop photos
  6. Passions:  women’s rights, Asian American rights, Disability rights –> how to save energy
    1. Suitcase with wheels/ moving chair
    2. Accessibility (ex:  more elevators in the city, better “wheelchairs”)
    3. How do we increase efficiency in obtaining empathy in each other in a simple, direct manner that makes sense?  –>  perspective of woman translating well for men.  Struggles of Asian Americans and immigrants, their story to become understanding or more relatable.
      1. Watch movies:  50/50 on reality of illnesses, The Godfather on moral dilemmas, Master of None on feminism, immigrants, ageism, hook up culture, racism, etc.
  7. Me:   Sound of heels clicking cleanly across the floor with a slight echo, rustling of a turning page, old smell of sheets of paper, fresh cut grass, moisturizing lip balms, Lupicia cookie tea and chocolate strawberry tea, slicing cucumbers, sizzling oil, matcha bubble tea, onigiri, ramen, glistening sashimi, glutinous gelatinous ba wan, emotional energy channeling through fingertips into keys, deep breaths, whirling thoughts, racing heartbeat, derp.

“You’re either a Blessing or a Lesson”

I found this quote somewhere on tumblr a long time ago, I think it might’ve been said by Frank Ocean but don’t quote me on that. This particular thought always stayed with me with the way I interacted with people.

As a homeschooled child, I never realized how naive my expectations for other people in the world were.  In a sense, I probably believed I was better than everyone else, in that I held myself to high moral standards, and my friend once told me that I was one of the few people she felt had such a moral compass who would never do the wrong thing or hurt someone.  My college years, I learned two things:  the full extent of my ability to hurt somebody I cared about (even unintentionally), and second of all, just how wrong the assumption that others hold the same beliefs, perceptions, or morals you do is.

I entered college beginning to experiment so that I could find my sense of self, both on a personality and aesthetic level- I made mild changes such as growing my hair long, got it ombre’d, began wearing some make up, piercing my ears, paying attention to the way I dressed more and how I carried myself.  It was such a sense of vulnerable freedom, to spread your wings out yet knowing that the immediate safety net of your parents weren’t beneath if you fell.  I tried to reinvent myself for the better- the cooler, more confident version of me.  To my disbelief, I was not quite a wallflower anymore, and even though I was still really shy, I forced myself to try to venture out my shell, and realized people not only seemed to notice me, but liked me.

However, my confidence was still in a budding phase, and the few people I felt a click with, I attached myself to quickly; I saw only their great qualities when they showed me a small act of kindness, and without realizing it, I subconsciously put them on a pedestal.  And then the first time they broke my trust or let me down, I felt myself spiraling downhill.  I wasn’t sure why my sense of other people’s emotions were so heightened, and oftentimes I can’t fall asleep at night being overwhelmed by all the problems that exist everywhere: I wish I could turn it off.

The intensity of my personality has given me the ability to observe and for the most part, see each individual clearly for both their flaws, potential, and beauty.  Everyone possesses both “good” and “bad” qualities, and these traits are what make them unique. I grew up seeing the world in black and white, but now I see that many things fall in the gray. Things don’t always work out in life, and we might end up becoming lessons in other people’s stories, but that doesn’t mean we should stop striving to be blessings.

As for ourselves, once we realize not everyone around us think on the same wavelength, we can reach a better understanding and be more tolerant and take things less personally.  If someone wrongs you, they are simply a lesson; move on, and cherish the ones who are blessings.

Embrace your strengths, and continue improving the rest.

Pet Peeves

  1.  When people go “aww” or even sometimes, “I’m sorry” or “I’ll pray for you” and usually end it at that – lessen filler words and replace them with something useful of substance; don’t try to sound like you care, just care.
  2. When people lie  – it’s all about integrity.  All it takes is one lie for someone to distrust you forever.
  3. When people gossip (when you talk about someone else for no reason) – mind yo own business… don’t start drama for no reason.
  4. When people can’t spell or mix up basic grammar (ex:  your and you’re, they’re and their, seperate vs separate) – automatically disqualified from any romantic prospects
  5. When people spit randomly while walking

I probably have more, but these are all for now.

Fears

My deepest fears?

I die forgotten and alone, never having made a positive impact on anyone in the world before I leave.

The realization that I will either lose someone I love deeply or they will lose me first- one of them has to happen.

That I will never feel like I deserve to be loved or accepted.

That I don’t have the energy or strength to go through the next phase of suffering.

That I bring more hurt and pain to someone I fall in love with than I should.

My Story Now in Insomnia: 19%

So I said this blog was going to be a space of good health and all that… but the past couple days have been really hard so I’m just going to be blunt and lay it all out there.

I don’t ever want to return to that feeling of hopelessness the way I felt for months two years ago, but it’s pretty damn difficult.  It really feels like the whole world is working against you in more ways than one.

I’ve been riddled with multiple ailments since I was a kid, and the one that’s affected me the most is my chronic lung disease.  Sometimes you dig yourself into a hole thinking about what could’ve been, and how much easier your life would be if all you had to worry about was hustling and getting a job and all the common problems.

I am only left with a lung function of 19%, and am literally living life on the edge.  Even on a day of not sleeping or overexerting myself or stressing out, I feel it immediately and need to take time off to just recuperate and rest.

When I was three, my mom and brother got really sick with pneumonia and I caught it as well.  After what appeared to be a normal check up, I was suddenly hospitalized and sent to the emergency room, where I was in severe care for a few days.  I remember looking over and seeing a black girl a bit older than me in a bed next to mine, and she smiled at me. I remember a few of these rooms, and even now when I smell alcohol and this weird hospital soap smell, it sends shivers down my spine.  I remember days of just being surrounded by dark curtains, where all I had was a sad TV to look at with cartoons and other things I wasn’t really interested in, but being unable to ask anyone because it was late and all the nurses were tired and tending to other things… in addition to my having a tube put down my throat so I couldn’t speak.  I remember someone occasionally coming over and asking me if I’d rather have a blue or pink pad to rest my IV on, and nurses cheering for me because I’d finally pooped after being bed-ridden for endless time.  I remember some nurses crowded in my room watching TV, someone coughing, and one nurse offering me ice cream even though my parents freaked out later as some other doctors deeply believed it would adversely affect my breathing condition.

Even now, I find it ridiculous that the hospital was so unsanitary that they would allow nurses to cough in the rooms of at-risk children like myself who were easily exposed and heavily affected by any form of contagion nearby.  I wondered if this was how I caught a virus that nearly killed me, weakening me so much that I could not leave the hospital for the next six weeks.  It nearly completely ruined my lungs.

When I was finally able to leave the hospital, there were many sleepless nights where the silhouettes of my parents hovered over me, measuring my oxygen levels, feeding me some sort of Iron drink, and giving me breathing treatments.  The first night back at home, I was so weak that when I wanted to seek my parents out, I dropped out of my bed and dragged myself to the edge of the stairs to call them out… I can’t believe I still remember this, and every time I feel the vulnerability of that helpless moment, I feel paralyzed all over again.   I was chained to an oxygen tank for many years, and this eventually changed to a portable one that was difficult and heavy for me to lug around in my still limited capacity.  I think I was finally able to get rid of it when I was about ten years old, but I was homeschooled completely until 4th grade.

My parents were Buddhist, but converted to Christianity when they prayed to God and I was able to leave Robert Wood Johnson.  After 4th grade, I was still easy susceptible to the flu and cold weather, so I was homeschooled usually from November to beginning of April, and this pattern remained until college.  This trend made it really hard for me to establish relationships with other peers, and I had more experience conversing one-on-one with teachers than anything.  At an early age, self-doubt and loss of confidence started becoming apparent when I felt like my health and inconvenient conditions wasn’t understood by many people, and I felt often like I was very vulnerable and at the mercy of my teachers or other administrators.  I experienced a lot of injustice where kids would walk behind me, laughing and taunting me to walk faster when I couldn’t and was so out of breath I couldn’t even defend myself.  I often walked alone because I was slow and couldn’t keep up with other kids, and I felt awkward asking my friends to wait for me, especially with my backpack.

Painful experiences included one time, when I had a long-term pass that allowed me to arrive late to class past the six-minute mark since my pace was much slower.  My sickness caused me to be absent for a couple days, and when I returned, during lunch period I walked the exhausting uphill path from building 100 to 800 to find my science teacher to make up a test.  One of the hall monitor teachers who had a reputation for being an asshole gave me the most difficult time when I showed up and lacking a specific pass from my teacher allowing me to find him for the test.  He drilled me on why I was in that building during lunchtime, and why I had arrived there about five minutes after the last bell rang.  I explained to him that it’s difficult for me as I walk slower, and he relentlessly questioned me, asking me why and almost mocking me as if I were lying.  I told him my teacher was expecting me for a test, and he allowed me to pass, saying I had better have that pass with me when I returned by him.

So there I was, so burnt out and oxygen-deprived, feeling like I had hiked up Mt. Everest, trudging on to my science room to make up the test.  Alas, the teacher looks at me, surprised, and says he wasn’t expecting me to come immediately the day after my absence to make up the test, hence he didn’t have one prepared for me.  I asked him for a return pass to lunch and told him about the man giving me a hard time.  He gave me a sympathetic look and told me the teacher is well known for being a jerk, handed me a return pass, and sent me on my way.  I was so disgruntled as I flashed the pass to the old jerk, and he had to squeeze in one last dig, asking me if I got my test done when there was no way I could’ve finished it in five minutes.  I told him no, and he said “I told you so” as I began my trudge back to the lunch room.

Other times, there were students I became friendly with and considered friend-quaintances, only to have them turn around in their seats to stare at me in April to ask if I was a new student:  in my absence, I had been easily forgotten as if I had never existed in their lives, and it hurt.

There were also gaps in my education where the time lapse in between transitioning from school to homeschooled caused some teachers to quickly skip over chapters in a hurry, whether they were lazy or whether it was to help me catch up as quickly as possible with my class, I will never know.  Some asshole teachers were not nice at all, and when I first returned to my high school math class, I asked Mr. Lynch if I could take the quiz Monday instead of Friday since I had not had a chance to go over a chapter with anyone, and he said “We can discuss it Monday.”  Monday, I came in, and he handed out the quiz.  I went up to him to talk about it, and he said “You’re taking it today.  We discussed it Friday already, what’s the problem?  If you did the chapter’s homework then you should be able to take the quiz just like everyone else.”  Needless to say, I didn’t understand a damn thing about sines and cosines, receiving a fat “U” for Failed, and unable to persuade him otherwise.

In the span of a few years, my old doctor had retired and I did not consistently visit a hospital in that time.  In high school, my parents took me to see a Morristown Hospital doctor, then back to RWJ for Dr. Hussein, and finally now, to where I am a patient at UPenn.

To make matters worse, my parents fought often, and I still remember the many nights when I felt really alone, sick and depressed- I would huddle in my bed, thinking I was going to hear my parents fighting in the next room over, or my mom bursting into my room to dish out some of her anger.  Other nights dragged on for probably months at a time where nobody spoke or communicated in the house, and I was forced to act as Owl Messenger to where my mom was holed up with her door closed, back to my dad where he was playing Freecell quietly.

My mom and I have a very complicated relationship.  I understand all that she has sacrificed for me over the years, but she was also riddled with her own depression and issues, using me as her therapist and complaining about her past, my father, and her unsatisfactory life, often of which I internalized into blaming myself for existing and for burdening everyone.  I felt so guilty and so silenced, and always worried that something was going to happen, and the whole house was always on eggshells or stepping on glass.

Over the years, our family has improved in many ways, and I went to see a therapist after my complete mental shutdown two years ago, and only then did things seem to start to get better bit by bit.  During that time period, my ex broke up with me and I found out I may need a lung transplant.  My parents were so worried about my getting too serious with a boyfriend, and freaked out, preventing me from living as normal of a life as I could for myself.  All the anger burst out of me, and I had no room to tolerate anymore.  For about two months, I was riddled with thoughts of suicide and sleeplessness.  Every second in existence was agony, and I would cry and squeak out jokes at my best friend that I would be tempted to cut myself if I only knew where the veins were, or I would like to drown myself in the bathroom if only there was a bathtub and not just a shower head.

She came to stay with me a few nights to make sure I was okay at school, and probably saved my life, sleeping on the floor in my room and listening to me as I cried over and over again.

My mom has hovered over me like a helicopter parent, trying to shield me from all the bad while simultaneously making me paranoid and aware of a lot of negative things.  I think depression runs in our family, and battling to gain happiness has always been a huge challenge.  I have no doubt in my mind that a lot of the anxiety and depression I feel is related to her own draining energy, but I still love my mom and appreciate all that she has done for me- I just need space and my independence, and yet it seems impossible since I will forever need to rely on my parents for many things.  Will I ever find a significant other to care for me unconditionally?  My parents will not be around forever, what will I do then?

And honestly, as much as I want to wholeheartedly have faith that everything will work out, nobody knows for sure.  There is so much in Christianity that both troubles me and gives me hope.  But in all seriousness, why is there so much suffering, cruelty, negativity, and injustice in the world if there is a God?  I need some sort of justification for this, and yet every time I’m in a really dark place, I pray.  I can’t help it.  Help me figure it out.  Please.

So even now, it feels like I’ve accomplished nothing, and I’m just stuck here in a sad, sad limbo.  But that’s not true, I’ve managed to gain some good friends in college, I graduated, and I need to believe that there is more to my life than what it seems like now.

Depression, anxiety, chronic lung illness (bronchiolitis obliterans), ear surgery, insomnia… what else?  Occasionally, I will open up to a friend who asks about my story, and explain to them what I have.  You will have people who respond in a really unhelpful, ignorant way, saying useless, vapid stuff like

“But you’re such an inspiration!”

Or am I just a fucking reminder that your life doesn’t suck compared to mine?  or

“At least you’re not like, really poor and stuck in a Third World country where you cant afford medication,” or “Maybe it’s all in your head?”  “C’mon, it’s not really THAT bad.”

No, and no.  You don’t fucking know, so shut the fuck up, please.  How do you talk about yourself honestly without sounding like you were seeking pity or victimizing yourself, or downplaying your challenges?

I so envied the college peers I was surrounded by, who only cared about partying harder and ending senior year with a bang, where their greatest conversations consisted of how embarrassingly drunk they got and how they were going to make it through exam week.  I related more to other people of a different, more isolated temperament… and yet, I felt like I was constantly used by others because they knew I relied on and valued their friendship so much.  Even now, I only have a handful of people who really understand me, or recognize enough not to belittle me, hover over me, or differentiate me.

I am hypersensitive to noise and get easily irritated… when I read Chopin’s biography, I really related to his character.  Maybe it’s a symptom of people with lung/breathing issues, you’re always on edge, grumpy, and oxygen deprived, so it makes you whiny and irascible.

There are a million things I’m trying to accomplish, even though on the outside it appears like I’m doing nothing.  Part of me feels a deep, deep despair as if there’s no point in grudgingly trying to figure out my future or my next step, and the other half is freaking out at my freak outs.  So if you have any advice for me, I’d love to hear it.  But only if it’s of substance.  Please.

And Dear God, please help me figure out what my purpose in life is.