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.

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August 12, 2017, Sat. @ 3.54am (technically 13)

#chroniclesofthechronic

Pt. 1 Overview

I feel like life keeps being really tough, and not just tough in the usual senses, but extra tough even when I’m just doing mundane, ordinary things. When people ask me what I did all week, sometimes I have to catch myself feeling sorry for myself, because I realize that my level of achievements can be considered small in comparison to others who are able-bodied and fast paced.  I can’t say anything exciting, but rather, I have to remind myself to be proud that each day, I meticulously planned out how to live in small increments of productivity and function, saving up energy to check off goals like laundry, cooking, remembering to drink water, and that I dragged myself out of bed and did these things, even though they were hard and do not match up to my level of ambition and what I would want to consider a “true” accomplishment.

My insomnia has worsened recently but I know why.  Hearing again that I need to see a lung transplant specialist wasn’t easy, but for some reason, this time a switch flicked in my head and I decided it was time to fully wrap my head around accepting doing the evaluations, no matter how strenuous that ordeal was going to be.  I constantly find myself wavering between moments of calmness and acceptance, almost contentedness, yet other times like last night, I lay awake in my friend’s guest bedroom, thoughts flying everywhere and causing an increasing panic in my head until I succumbed to the pill to aid me in sleep.


Pt. 2 Log In of the Day

What I originally intended to write about though, was happiness.  I had a rough week (what else is new, the usual levels are rough, rougher, and roughest), but today was a good day.  A solid, good day.

I had been worried that today would be bad, as usual. Yet it ended up being one of the best days I’ve had in awhile.  Friday night, we prepped hard for a dessert competition at fellowship, and even though we placed third, I felt pretty proud and we did bond with our team by working hard to produce a beautiful panna cotta.  And today, we went to dim sum and it was a lovely meal with a large group of people.  Then, I migrated back up north for another fellowship and met some people, and finally migrated back down where we spent a great night learning how to make fresh pasta and EATING it!!!  Seriously, the best pasta I’ve ever had… it was what I always imagined fresh pasta to taste.  Delicious, right amount of bite and sauce.  It was fun, and we had some sangria as well.  We also watched a bit of Master of None and the rest played card games.


Pt. 3 Insecurities on my Physical Capabilities, but also- Body Appearance

A crazy thing that happened recently is my weight gain.  I weighed around 92-95 lbs for the longest time, probably from all of college until now.  I weighed myself a few days ago, and each time it was the heaviest I’d ever been… first I hit past 100 and couldn’t believe my eyes… then I hit 103 within two weeks. I was getting a bit concerned… because even though I know I’m not concerned “fat”, I’m also now looking very “skinny fat” where the rest of my limbs are super bony, yet my stomach and cheeks are protruding…. I even have a muffintop.  Then I saw a few candid pictures of myself, and I was kind of horrified at my shape. First of all, my stomach protruded quite a bit around my lower abdomen area, but my legs were still super slim and lacking muscle… it reminded me of the Titan in “Attack on Titan” that was round and fat but stuck on a house with its long, super twig like legs.  I also have a TERRIBLE posture, and I guess from my tense muscles and all the stress of anxiety + breathing struggles, my shoulders are a bit risen up and hunched over, especially from the right side.  It really looked very unattractive to me.

I know that steroids do deposit fat differently for your body, and I guess I’d never been on it as much as I was in the past year, and particularly now that I’ve been on it for almost two weeks now to see if I can improve my lung function.  While I was never super concerned with my body appearance prior, I was never a super fan of my body either and just thought the major complaint was that I was too bony all over, especially my bony knees and lack of butt.  But now in addition, my lumpy waist and hunched shoulders just all in all are a mild devastation to me, psychologically.  I don’t think I’ve ever felt actual unattractiveness like this, even when I’m just in bum clothes and glasses and hair that hasn’t been washed in over a week…

Steps to take to stay determined:

  1.  keep working out and doing planks + gym as I can at least 2 times a week
    1. particularly, strengthen back and chest workouts, and legs… and arms… ok basically everything
  2. try to lessen sugar intake and eat more vegetables, fruit, and protein (find more delicious recipes + buy healthy foods)
  3. keep being productive in writing music for grad school
    1. sign up for GREs/ plan a date
    2. shoot emails to professors sometime in late September asking for recs
    3. keep doing research on other grad school programs
    4. follow up with Monica on online graphic design program
  4. do things to make yourself happy, like walk with Meg around neighborhood, hang out with friends
  5. TREAT YOSELF –>  bubble clay mask, hot  bath, hair treatment at salon, massage, leg wax/ exfoliation, clean make up
  6. Express yourself –>  continue improvising on piano, learning Chopin piece, also Photoshop + Illustrator (empowerment of chronically ill women <superhero with treatment mask>  <cute new kinds of hospital wear…>
  7. Google Analytics / Hubspot /Lynda Academy for digital marketing, etc.

 

 

 

July 19 Reprieve: Moment, Pause, Break

I been tryna keep busy, keep running, keep moving, but the second my mind slows down and tries to take a breath of calm, it jumps all over the place, and ends up running, but instead of with me, it runs away from me, spinning out of control, whirling, and I can’t chase it down or catch up to it.

Fear of other people, fear of myself, fear of being drained, fear of not being drained enough, fear of the future, fear of now, fear of not getting over from the past.

A moment, a pause, a break.  Don’t let it all break you.  Don’t let them hear your thoughts, see you spiraling like crazy, hitting the ceiling, bouncing from last year’s sorrows to revisiting the lingering moment of choked up hurt sitting in your room.

Sometimes I think it’s better to stay outside of the fishbowl, to peer in, interact, and pull back out to observe from a distance, but never be caught in the drama.  Then you stay in the honeymoon zone and don’t enter the disappointment zone.  Of how people let you down and reveal their true colors.  Oftentimes its scent turns more sour than what drew you in from a distance.  Don’t let them use you and throw you away like just another tissue paper.  Make your existence matter to them (although this sometimes feel like you’re fighting against the current).

How can what once felt like it was becoming home, feel suddenly once again as much of a stranger as when you first entered, except worse because you know that’s not how it’s supposed to feel?

Was it because I forgot my medication.  Is it because it’s that time of the month? (It’s not).  So… what is it?  Life.  lol.  Emotions.

She Needed a Hero

“She needed a hero, so that’s what  she became.”  -Pinterest somewhere

Sometimes, life gets to you.  And I think especially with people dealing with chronic illnesses, it can feel so constant and repetitive like a truck repeatedly running you over.

These days, as the weather gets colder and colder and we hit the 20s at night, I am more and more susceptible to darker thoughts of depression and wanting to give up and lay in my bed forever, to avoid all risks and perils of being outside.  I had a moment a couple nights ago where I realized it was food poisoning later, but that night I felt such discomfort and anxiety that I felt like I was going to lose my mind… I had been feeling this crazy anxiety all week, and insomnia was hitting me so hard again.  My body couldn’t relax, my thoughts were clouding my mind, and as much as I wanted to calm myself and tell myself that it was all temporary, just a bad night of nightmares mirrored in reality, I got scared with fleeting thoughts scattered into my brain of temptation.  The worst kind of temptation, where I thought it would be better to slit my wrists, drown myself, than endure more of this never-ending suffering.  And I knew I would never follow through with it, because at the end of the day, it does take just as much courage to end your life as it does to choose to keep going, and I picture images of my parents looking at me, horrified by how much work they invested to help me, and I failed them. But I felt like I was being repeatedly punished anyway when all I wanted to do was be.  Not constantly survive, but just exist.  Float around, and try to achieve some “normal” milestones in life, like get a job, maintain a social life, date, explore.  Because all of that isn’t already hard enough by itself, right?

The feeling I’d been having deep in the pit of my stomach lately is mainly anger, and then guilt.  Feeling like I am not a good enough friend, or daughter, while struggling to fix what’s on my plate.   And trying to make sure I’m vulnerable and open to other people with my struggles, but not overburdening them or scaring them away with the amount of problems I have.  Nobody likes being around unhappy people.

In addition, once you share that information with people, it can either go really well or downhill.  People might start to distance themselves and you become “the Other,” the sickly one they don’t really want to deal with… or they start hovering and panicking and treating you like you’re really different and need assistance with every little thing, like you’re useless.  That’s how my grandma and cousin reacted and it became really exhausting and annoying quickly.  Or I suppose, there were the few handful of great friends I still have now who have always treated me like a human being, but put into consideration my needs whenever I needed, and I will always treasure and love them for that.  Sharing their day and problems with me, just as I do, the way it’s supposed to be:  Equals.  No pity, no ignorance, none of that shit.

Secondly, trying so hard not to be consumed by fear.  Fear that I am not capable of being loved, that no one will ever be able to or want to deal with me, fear that I have nothing to offer them.  Knowing all of it is not true, yet somehow still standing here, wondering.

Thirdly, just the isolation.  This is about to sound real emo, but it’s crazy how many times I’m surrounded by so many people, yet feel so alone.

Some days, I’m able to work through it and just think, fuck it, I’m fine.  Everything’s fine.  Just breathe.  Other days, and it’ll get worse as we get deeper into winter, I can’t help but feel shackled to a singular spot, paralyzed by the knowledge that I both know and don’t know.  What I can expect, and can’t expect to have out of life.

And then the people that I feel relatively comfortable around and at peace with, at the same time, don’t.  I’m tired of hearing people use the common response “Pray about it.”  I very much want to give in that it’s out of my hands and part of a greater plan, but I can’t.  Do it.  Maybe it’s my resistance to giving up which is what it would feel like, or my inability to just hand over my faith blindly, and I want to pray to God and ask him for help, yet things in life still keep rolling on whether or not he’s really answered.

Am I believer?  I don’t know.  Do I believe Jesus died on the cross for our sins and is our Savior?  I’d like to.  But I don’t know, I don’t know, I don’t know.

“I’m okay” (but not really)

When someone asks you, “Is everything okay?”  or when people (at least in America) ask “How are you?”  The answer is probably 99% of the time “Good!” This is such an automatic reaction that I notice people continue talking without even waiting for the response, and they bustle to talk over each other to continue to other things or something to that likeness.

I’m a terrible liar, so it physically makes me uncomfortable whenever I have to answer things like this.  I’ve gotten better at it over the years, but it still makes it a lie.  Here’s a scary thought.  What if it never gets better?  Your answer will permanently stay a lie?

You hide behind your smile, but even that feels untruthful.  And people comfort you and fall to the default of “It will get better” with all those testimonies.  But for those where it didn’t get better, guess what?  They aren’t going to rain on anyone’s parade by publicly coming out and say “It doesn’t.”  Chances are, their lives have fallen so dismally they wouldn’t bother to.  They’re busy dealing with the heavy load that has been placed on their shoulders.  It could be anything… alcoholism, suicidal thoughts, drugs, disease, pain in general that won’t go away.  Maybe they were gone already.

And me?  I can train myself to follow the wisp of thoughts that it might get better, but I’ve lived 23 years like this, and my best hope is more that it will continue to stay like this, and not worsen.  That’s the truth.  But the truth is so dark, the issues are so widespread from the immediate to the long term, that I feel some days like I’m waiting in a holding cell for her expiration date.

Some people walk by this holding cell, either completely ignorant, oblivious, or just don’t give a fuck.  The few who stop might gawk, or ask with some sympathy how I’m doing.  You know what?  I don’t want your sympathy.  That’s like feeling sorry for someone, feeling pity.  I want empathy, I demand understanding for everyone in this world. But the reality again, is that real peace and happiness will never exist.  We want equality in the economy?  That’s called communism, which we know doesn’t work.  In democracy, someone will ALWAYS have to get the short end of the stick.  And there are too many damn selfish people in the world, statistically, many simply just want to get through life okay, can you blame them?  (sometimes, you can for being an asshole).

This is supposed be a blog about positivity but you know what?  Positivity and happiness is only measured in relevance to suffering and depression, so they’re one and the same topic.  Obtaining it, lack of it.  Here’s the real truth. Honesty, this here, the only space in existence where it exists, untainted.

And so, what would I reply to this person who asks me if I’m okay?  That’s a loaded question.  But maybe they don’t really want to know the whole truth.  As me, the one with the issues, am I supposed to be the one who bears the light bravely and inspiringly, beaming at everyone in my sickbed (figuratively speaking for now) so that I have any redeeming qualities and serve some sort of purpose for others?

I don’t want to sound emo, so I’ll just stick with “I’m okay, thanks :)”

 

It Never Ends

I spend all week feeling some type of way, trying not to feel so much because it’s too much to handle- I feel like Tommen in Game of Thrones some days.  Of course, compared to that world I guess this one is okay, but any worse and I’d want to jump off a cliff too.

What is the light at the end of the tunnel?  Maybe this week’s is meeting new people and friends and attempting some norms like laughter and blending in with everyone else.  But once the day approaches, I’m feeling another type of way. Anxiety.  Fear.  Feelings of doubt- why do I bother, why do I try, why can’t I turn off my thoughts, why is it so hard just to, be?

Is it supposed to be this hard for everybody, because I don’t think it’s the same?

This week’s two favorite pieces of music:

  1.  A new discovery, which is “Save Me” by the korean boy band BTS.  They’re not perfect, but I’m impressed with the vibe of the song and the dance.
  2. An old favorite, which is “Forrest Gump” by Frank Ocean, channel ORANGE, also my favorite color… while we’re at it, my other songs that I like by him are “Pink Matter” and “Lost.”

Sigh.  I’m in a sad place right now, but I won’t talk about it here until I’m ready.

 

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.

Truly Good People

Recently, I’ve been having a crazy mix of feelings.  Part of me feels tremendously grateful and emotional for not suffering so much through my insomnia and insane levels of anxiety.  But the other part also feels like it only mastered dulling the pain momentarily, but the anguish still seeps through incrementally.  “Without suffering, there would be no compassion.”  It’s hard for people from their privileged perch to look down and view the rest of everyone else as a part of their world, because they have the option to not interact and treat others as another realm, separated by an invisible wall of glass that divides the experiences of all of us.  They can’t relate, and can go on living their lives in the smaller everyday problems, those we recognize as First World problems.

Maybe it should be mandatory for everyone to go through a serious phase of poverty and illness to truly be able to spread the compassion and mutual understanding that often bonds us to each other.  We are connected in the most delicate threads of wispy webs or silk, ones that make us love, feel pain and empathy for each other, makes us more resilient than we could ever realize.

On my trip to Europe, I was in a bad place, and it was hard to ignore, and I felt deeply all the suffering that I saw.  Here I was with my own horde of health issues, yet when I walked down the streets of Sorrento or Naples, there I stood in front of two women with their children in the streets, their life haunted in their eyes, one of them with their nose cut off; I felt my touristy privilege hit me and them in the face.  There a million tourists who flaunt off their wealth with Gucci perfume, Prada purses, and Ray Ban sunglasses strut by everyday without batting an eye, protected by that invisible wall, or maybe their own hardships had hardened them against what their eyes saw, but didn’t perceive anymore.  Throughout the trip, I spared a dollar or two here and there, but when I returned and told my friends, they warned me that the money might have been collected by gangs instead, and possibly endangered the women and children’s health further.  That point worried me.  The conversation reminded me of a scene from Whiskey Tango Foxtrot where Tina Fey’s character tries to stop Martin Freeman’s from giving money to a child, “Stop!  It’s a scam.” “So what, they’re still in the streets begging, aren’t they?”

I thought, how could one end up in such a life where cutting off the vulnerables’ noses be the only way you made a living?  Then I thought, like everyone else who turned a blind eye, once the wall was up, it couldn’t be that difficult once such things transformed into a norm in one’s mind.  Maybe even judging what was immoral was immoral of me:  after all, I had the privilege of never having been put in that position or had to make that kind of choice.

Lately, everything on the news seemed to weigh heavily on my mind, not only made me sad, but actually flooded in and settled like a toxin, and I felt like I had to stem the flow by blocking out some of it by setting up a wall, otherwise it would be too much to handle. I felt some days like my mind was being eaten alive, consumed by all of it. Being depressed never solves anything though, I thought.  Nobody likes depressed, pessimistic people.  You have to fix your own problems and stand on your own two feet before you can start making a real difference in the bigger picture.

I roamed the aisles of Barnes and Noble one day, and opened the first page to the life of Hyeonseo Lee, and got pulled immediately into her story.  It’s called “The Girl with Seven Names.”  There were no words for the tremendous respect I felt reading through everything she endured, and how happy I felt to know she made it safely from North to South Korea, even if it took a decade.  After all that she experienced, losing her father, almost being raped, almost being deported, almost being sold into prostitution, being betrayed and hospitalized by strangers, she made it.  And the part of her that was close to giving up, was shown how kind humanity can be at the most random moments, when Dick Stolp, an Australian backpacker, a stranger to her, decided to hand her money to buy her family’s freedom.  For no other reason than to help.  He could’ve decided to conform to the general conventional realistic, or pessimistic belief that she was trying to cheat him with a sad story, but he didn’t.  He chose to have faith despite the million reasons why one wouldn’t do it.  And when you think about it, is the cost of 5 human lives worth $1000?  More than that.  And yet, most of us wouldn’t do it.  Maybe we look at a life that is smeared in dirt, trembling at our feet in rags, and we get to decide that that life isn’t worth giving a hand to.  Why?

It would’ve completely broke me if I were to give all that money, to find out that they didn’t even make it to safety.  And that might’ve been enough to prevent me from giving out that money, which is so selfish.  We’d rather not have to cross that wall, or momentarily dip into the contaminated water of someone else’s life if possible.

And that brings me to my next point.  There is no doubt humans are complex, most of us have bad and good sides.  And yet, I can think of a handful of people I know who truly, absolutely do not judge people by their appearances, financial status, or other things that so closely wrap around our everyday perceptions, yet are so superficial.  And I feel so proud to know these people.  There are 100% moral people in the world who are overfilling to the brim with kindness and goodness.  Often, they are taken advantage of by other people, but it doesn’t diminish their spirit because it would be so hard to take that away from them; it’s a part of them.  And that makes me have faith that these kinds of people still exist.

 

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.