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.

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Accessibility and Judgment at Broadway

Today, I want to talk about one of the reoccurring experiences I still struggle with accepting and going through, and that is first of all, how the lack of accessibility and modification of transportation in NYC is a huge detriment to many people who need it to get around and get opportunities.  Second of all, being strong enough to withstand judgment from others, whether friends or strangers, on your invisible needs, and probably getting judged for it.

One thing I constantly have to be conscious of is how quickly I use up my spoons for the day.   I modified some of my plans to tailor it to my needs, such as taking the train station in that is direct into the city.  Second of all, I decided in the cause of preserving my energy, I used the elevator once I got into Penn Station.  Third of all, even though I ran into a minor bump by trying to order a Lyft, and then ending up taking a taxi, I met up with my friends and got my taco as well.  The broadway show Cats was a little weird since I felt there was no plot, but nevertheless I enjoyed the experience.

I was a bit tired, but during intermission went to seek out the handicap bathroom in which I found myself in a line of mostly elderly people with bad hips and canes.  I knew I looked like I didn’t belong there, but I also knew in my mind and heart that I deserved to be there and it was my right to use that bathroom.  What wore me down a little was a few ushers swinging by, looking right at me and speaking mostly directly to me that they “highly encourage those who are capable of taking the stairs to do so with the one downstairs”… after the second time, I got a bit defensive and exhausted, and told them there was a reason why I was using that bathroom in particular.

It was also annoying that the old lady in front of me invited another older man to cut in front to use the bathroom…  I let him do so, but I wasn’t sure if it was out of kindness or guilt that I didn’t belong there.

Later on, we quickly racked up prices in using Uber to get around to the udon restaurant… It sucks that this is an extra price to pay as someone who has disability conditions, much like a woman having to pay for tampons and other needs just because she’s born with a vagina and menstruation cramps.

The world isn’t fair, and we have to try to find the courage to speak up for ourselves and for others.  Acceptance is key, and I’m on my way there before I can embrace it and fight for the rights that we are entitled to.

A Good Day- June 3, 2017

I don’t know if this is relatable to the general population, but for me as a person who struggles with disabled conditions, to experience and live a good day, is one of the rarest but most satisfying feelings in the world.  The days included among my happiest was such as the day I sat in a Venetian gondola, the day my study abroad friends celebrated meeting me on my last day in Taiwan, and a day at work where a bunch of little kids helped me plan a surprise party for my co-counselor.

Yesterday was a good day.  Even though I still struggled with my condition and the usual limitations, I still got to live and be with friends, and I felt that was one of the most important, gratifying feelings, just to have, and be present.

I woke up at Allison’s, went to Girl’s Group, ate delicious cookies, sandwiches, experienced my first cold brew coffee with french vanilla creamer, got mind-blown, went on a timed, spontaneous yard sale spree with Allison from 3-4pm where she hit the jack pot at another church with a $5 a bag deal! She got a beautiful entire tea set in addition to other glasses and miscellaneous things.  I finally did spend on a $3 bracelet that I thought looked very unique, it had 5 burgundy jewels and was elastic, so it was easy to slip on.  Satisfying good purchase and deal 8 )

I left her house to drive to Montclair and find Cuban Pete’s for Jon’s birthday.  It was a little rough as I didn’t know the area and realized parking was very difficult, but I heard the restaurant was very good.  I was the only one to get there at 5pm, another group arrived around 5:15 and the rest arrived closer to 5:40.  I found street parking by luck about a block away, found Glendyll and Amy inside the CHAOTIC restaurant.  It was so packed there wasn’t even room to comfortably stand… I was told the wait was 2 hours.  I went outside and sat on one of their chairs, and Jenn, Abby, Jordan and Nate came to find us.  This guy who seemed a little sketch came up and asked one of us to go with him to hook us up with a table, and he got us a table for 15 around 6pm!!  We were pretty excited, and the mango and pineapple sangrias and food was pretty great.  Afterwards, I was a bit annoyed as the group couldn’t make up their minds on what to do and just wanted to walk around.  We took pics outside and then after awhile, I was tired and decided to leave them to it and go find Allison, who was with Jeannie at Steve’s house.  Turns out, Sean and Sam were also there, so we just chilled, discussing VBS and talking.  Around 10:30pm, I gave up on waiting for Amy and was tired, so I decided to go say bye to them at the bar and drive home.

Even though I got borderline annoyed that they couldn’t make up their minds on a set plan and just wanted to wander around even though a couple knew that I tired easily, I guess I felt fulfilled and proud that I could do as much as I did on a beautiful day.  The day was perfect weather – about 74 degrees.

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.

Advice for Greater Empathy- the Dangers of Inspiration Porn

I don’t know how many times I’ve been called an inspiration by friends or just people I’m having a personal discussion with.  I think it would greatly benefit everyone in general to learn about how to help others in having greater empathy-  counter to general belief, there is also usually a “better” way to show your empathy with someone you care about… of course, there are the typical “I’m so sorry for your loss” or those standard sayings, and while they’re not “wrong”, I often find a lot of people are completely oblivious or unsure of what the right things are to say to someone in need.  Of course, to a certain degree, different kinds of words or actions to show solidarity or other types of things work for different kinds of people and characters, but if one were more willing to open their eyes and minds more, they would find that there are usual sayings or things people do that are actual less helpful than they think… and actually kind of useless and frustrating for the person hearing it.  If one is interested, there are always more specific, better ways to gain understanding and empathy, and to show it.

One of the things that I find vital for people to learn is the right wording and the right timing for it.  I am not an inspiration simply by default for dealing with a chronic condition- some people might find this comforting, but be careful in who it is and making sure what the situation is – illnesses and health conditions vary as much as the individual human experience in anything else.  If they grew up totally fine managing their health, why go out of your way to tell someone in a wheelchair they’re an inspiration and singling them out like that, and without first understanding what their struggles are, if they are even what you assume they are?

If perhaps they recounted how difficult it was to rehabilitate themselves after a hospital run or something, it might then be acceptable to say you’re inspiring for pushing yourself to get better, or for opening up, or for using their experiences and platform to further a cause and raise awareness.

It pisses me off when I see some video on facebook with a girl in a wheelchair singing her ass off, and somehow that being by default, “inspirational.”  Do her legs have anything to do with her pipes?  If not, then why is it inspirational?  That’s the wrong use of the word, and what I would label under “Inspiration porn”-  you posted that and made an immediate assumption because you saw she was in a wheelchair, and it made you feel more driven or blessed in your life somehow.  You can be grateful for your own health and appreciate her vocal ability without denoting it to her physical ability to walk, or to think wow that person’s life must suck, I feel better about mine.  That’s WRONG.

 

May 2, 2017 Update and Thoughts on Identity

I finished watching “Sing” last night and I have to say, even though it was more enjoyable than not, I couldn’t help but compare it side by side to the other Pixar films and feel that it fell a bit flat.  First of all, maybe there were just too many characters with subplots that the overall arch had a little struggle in transition and screenplay… my favorite was probably Johnny and his father’s relationship and how it reconciled towards the end, that was touching.  But the rest felt a bit disconnected and the emotion didn’t feel translated well, particularly with Buster Moon and Meena’s story.  It was lacking a bit of a magical, more in-depth touch that Pixar movies like Toy Story, Up and Finding Nemo/Finding Dory has.  That said, I will refrain from judging the whole of Sony vs. Pixar animations since Pixar’s had a few apparently lackluster ones recently, such as “The Good Dinosaur” and “Cars 2”.


 

On the days when I wallow in depression or pity for myself, whatever mood or situation that brought me down tends to lead to other thoughts that bring more negativity.  I noticed that in a lot of the issues regarding inequality in America, I don’t necessarily have it the worst – for example, I am not a black woman,  I am not a refugee, and I am not living in poverty.  However, there are many other parts of my identity that I am discriminated against, and I start to sit back and count all the ways in which I am “losing out” in our society.  Asian, a woman, and also dealing with chronic illness and anxiety/depression issues.

But you know what?  I don’t particularly concentrate on that every moment of my life- most of the time, I’m just, me.  And in another perspective, I have one foot in in multiple kinds of discriminative causes and conditions, and that gives me a firsthand look into other people’s eyes and experiences.  I have greater empathy and understanding because of it, and I can use this as a strength in life.

Life can be (but is not always) Farting Sunshine and Rainbows, But It’s Okay

I don’t know if anyone else follows a certain page featuring kids with special needs, but for the past year I’ve followed Christopher Ulmer’s mission relatively closely.  I support his goal to interview these people and to share their stories and perspectives with the rest of the world as normal human beings who just want to be accepted and treated the same way.  But maybe I’m feeling pessimistic today?  I’ve definitely been feeling annoyed at a lot of things lately.

I would always watch each video uploaded the day it came out and try to learn what I could from what I saw. But one thing nags me right now.  It just seems unrealistic that every single one of these human beings give happy-go-lucky answers, smiling about how they think about girls, friends, and their mom, and how they want to spread love and joy and appreciate everyone and all those good feels.  I’m not hating on it, I think it’s great, but it starts to feel repetitive and, well… can we call out the elephant in the room and discuss more about feelings and the tough parts?

Because it’s okay to feel anger, frustration, and pain at what hand you’ve been dealt in life.  It doesn’t do to focus on it and become drowned in it, but at least, speaking for myself here, there are moments, days, weeks, even months when you just have had it and you’re fed up.  At those times, is it not human, all the more real of emotions, to just let yourself feel, go through it, and then try to try again?   I want someone to say all this in one of his interviews, because it’s real.  It’s the truth.  That is what it means to be an inspiration:  getting back up despite everything, not a few seconds of positive babble that downplays their experiences and has cheerful, content, beaming kids in every clip.  I just feel like when all the kids appear to be of the same mold and outlook, it’s not a full or completed portrayal of the full range of human experiences.  For the people who go through chronic conditions as well as the people surrounding them who help, it’s different.

To “normal”, healthy people, I would like to explain what it is exactly that chronic conditions are like.  Sure, everyone goes through rough patches in life, maybe break ups, loss of job, those kinds of situations.  But having a chronic illness is like having a guarantee of those things either existing 24/7, reminding you with every small thing you do like breathing, moving a couple feet downstairs, or needing to ask someone for a favor.  People with chronic conditions have to wear a mental suit of armor at all times.  So when I see privileged people get all worn down by something like grades or worrying about not getting a job despite a 4.0 GPA and a million extracurriculars, I can’t help but feel a little pissed off and discouraged.

It’s a bit like someone getting upset that they got distilled water instead of spring water, when so many people elsewhere have access to no water at all:  there is almost little to no chance of them obtaining it.  So, just to even know there is a possibility, a hope, to gain something if you work hard at it and have a bit of luck, is a huge thing by itself.  What the absolutely worst circumstance is knowing that you will never get that opportunity, because it’s simply not in the cards for you.

And tonight, I’ll whine a bit and get it all out, but come tomorrow?  Tomorrow, I will have no choice but to wake up and work at it again, replenishing my mental and physical attitude as best as I can.  Even though you’re standing in the middle of the gym or the supermarket and feel really off and just unwell, you’re still standing there, smiling at strangers, holding up a conversation, putting on a mask to blend in with society so that you fit in as best you can.  And as you steer yourself towards the car with the handicap spot, you take down the sign because you don’t feel like you deserve or want that label for yourself.  Moments later, you see a tall, white dude walk out, stare at your car in its forefront spot, peer at you, and decide to continue walking.  And then, ladies and gentlemen, you know once again, that you have been judged in the span of five seconds.  But what options do you have, except to brush it off and continue on your day?

For so long, I felt like I had no right to complain, but I do.  It’s not okay to take it out on other people, but I do have a right to feel sad or upset.  It’s okay to feel this way.  It’s okay to be realistic and just call things out on what they are sometimes.  After all, we DON’T live in a world that shits sunshine and rainbow farts.  There is a lot of cruelty and injustice happening all the time, all you have to do is turn on the news to get that.  We can’t blindly ignore it as if it were not part of our world, but we also cannot let ourselves become consumed by it.  What a delicate balance and just plain fucking hard thing to do.

The Principle of the Matter: Star Wars @ RU

Summary of the day’s events:

I’d been cooped up at home for a few days being sick and all, and really needed to get out of the house to get my motivation running so I could get shit done and start visualizing my future and work on all the steps toward it.  My friend and I had dinner plans at Buffalo Wild Wings because her house has Vegetarian Wednesdays and she hates that and she had a letter that issued a free meal for two from a prior complaint her parents had with the food.  We showed the letter to our waitress, and from the very start, she had the worst attitude and stink eye towards us.  After awhile, my friend wondered aloud if perhaps she had spit in our food.  At the end, I asked her for the receipt, and she all but seemed ready to bite my head off for asking… until my friend said “It’s for the tip” and she seemed startled and said “oh, ok!” and bustled off to get it.

Now, my friend and I are pretty reasonable tippers and usually give 18% for neutral to nice service.  After the way she seemed to hate us, we settled on a 15% tip, which to me seemed generous considering I had an unpleasant experience because she seemed so pissed whenever we asked to order or get a take out bag.  The only thing I could reason with was that she had a terrible day or yesterday.  As someone who worked in retail for a few months, I understand it can be difficult, and I also know that anything regarding customer service can really suck sometimes… but we were nice customers, and she looked straight up angry and antagonistic.  I want to give people the benefit of the doubt, but if that wasn’t the case, then I can assume that this attitude was her norm, or that she presumed upon receiving the letter that we wouldn’t leave her a tip.  Regardless, the Principle of the Matter here would be that regardless of whether or not she knew we were going to tip her, she shouldn’t have had such a bad attitude, and being a decent friendly human being shouldn’t have been contingent on whether or not she would get paid for it.

Now, to play devil’s advocate, I’m comparing this to the countless times I’ve smiled at strangers or held the door open for them, and they don’t reciprocate or say thank you.  Sometimes I have bad days but I still out of habit smile, and then I have the rare occasion day where I don’t bother to smile, but when someone I don’t know smiles at me, it instantly makes my day a bit better.  That said, nobody is obligated to smile back at me, and if someone is accustomed to not smiling back, then is it safe to assume that they live in a joyless world and there is something bigger that they’re going through that makes them incapable and permanently too upset to return the favor?   I’ve noticed in people’s stories, whether in reality or in shows that often when one is going through something real tough and is struggling just to be present and make it through the next day, it can definitely be hard to do something that seems so simple.  Maybe you’re struggling with depression, maybe you just moved to another country as an immigrant and can’t speak the language or don’t have enough money to pay for dinner.  Maybe you’re a victim of domestic abuse and distrust others so much that even a smile can seen suspicious or sinister.  Maybe you just don’t feel like it.  And I suppose that’s ok.  But it still bums me out a little.

—————————————————

After BWW, I wasn’t sure if there would be close parking to the building where the Economic Costs/Physics of Star Wars lecture was being held.  Apparently the actual parking lot was pretty far for me, but it would be okay to park in the temporary spots if I had my handicap sign up… no luck.  Came back to find a ticket on my windshield.

The lecture was super cool, I love just learning about the new ways in research is being done and the fact that there are other worlds out there outside of our own.  We also got to watch part of the most recent Star Wars.

The Principle of the Matter:  my friend texted this to me when I was complaining about getting a ticket to her, and I think it makes a lot of a sense.  I would compare this situation somewhat to the plot of Les Miserables.  The ethics of that situation was that the main character stole bread, and technically that was a crime and he got punished harshly for it.  But can you really blame him when one cannot afford food and the alternate option is to starve and let your family starve as well?  I think it sheds light on a bigger, systematic problem.  I would still get mad if I got robbed, but I guess if I knew it was going towards someone’s livelihood and they needed it much more than me, I might be okay with it.

Same principle:  Sure technically, I shouldn’t have parked there, but the problem is the simple, basic fact that the parking lot was much tougher for me to do, and there were no handicapped spots.

This principle applies not just to disabilities or economics, but to race, sexism, everything else.  If we don’t make a place for those that are different and placed at a disadvantage, then how can we penalize them for their actions?

 

 

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.

Alter Egos

Shower Post #3

Do you ever react to a situation differently depending on your mood?  I think we all do.  A part of it may be an innate, so deeply ingrained part of us that can’t be changed.  At some point though, I wondered if I might even be bipolar.  What I’ve concluded is that everyone has multiple facets to their personality.  What is the real me?  Does anyone know?  Most people who think they know me might only have met the predominant me, or the stereotyped quiet Asian girl who has been trying to find her voice all these years, and still is.

When I was younger, I feared nothing.  Throw me in the deep end of the pool- I didn’t know what drowning was, so I had full confidence I would float and make it to the top.  Tell me to belt at the top of my lungs to strangers and introduce myself afterwards?  Why not.  Dare me to walk to the edge of a cliff and gaze down the world at my feet?  Sure.  Once upon a blue moon, I was fearless.

At some point, things changed.  Self-doubt had me wrapped around its fingertips.  I became a slave and puppet to the moods of others.  The obstacles leered over me, laughing at me as I became imprisoned in their shadows.  Over time, I withdrew into myself and people knew me as the shy, obedient, and tiny girl who could be easily coerced into doing their bidding, or who would stay silent to their mockery.  It was hard to make friends, but I had all these feelings bottled up inside, frustration mostly.  Multiple circumstances in my upbringing, household, and life molded me into someone I did not like.

If you caught me at a certain phase though, you would have met a different side of me.  Maybe it was the frustration spilling over, lighting a fire to my being.  Quell your voice.  Humble yourself.  Respect your elders and adult authorities.

Jasmine, why don’t you have any friends?

The journey I’ve made is mine, and maybe you do or don’t relate to it, but damn I’ve traveled a long way to where I am now.  The challenges are not over, and yet I can resoundingly say I am proud of myself to still be here, existing.  I am a survivor.  It is vital to first survive and overcome your demons, so that you can really live.  Maybe most of the time, it’s a struggle just to exist, to be.    But if there is a silver lining to all the pain and suffering you feel, it is that it will make the beautiful moments that much more beautiful.  After some self-reflection, I divided myself into Five Identities (more in the future on the ID, Ego, and SuperEgo via Freud)

  1.  The Obvious Identity- Passive, Submissive, Quiet, Hardworking – who most people think is me… only recognizing the side of me who tends to be a pushover, likes classical music, smiles too much
  2. The Fierce Vibrant ID- who likes orange hair, the sensual human body, admires bold and free-spirited women, colors, has a temper, has no time for BS, all kinds of music (yes, I like hip hop music sometimes, depends on the specific song, why is that so surprising… all genres can be incredible, including that genre)
  3. The Dreamy Artsy ID- aspires to mix all kinds of art, loves photography, music
  4.  The Hateful, Depressed, Sick ID- consumed with negative thoughts, some worse than others.  The devil voice that whispers and tells you to give up, what’s the point.  Always tired and uncomfortable, grouchy, withdrawn, pessimistic, blames the world and everyone else (1/2)
  5.   The Overcheerful, Optimistic, Bubbly ID – super happy and excited all the time, wants joy to be spread to all corners of the earth, wants to save the world. (2/2)