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.

 

 

 

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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.

My Strengths (Job Interview Self-Reflection)

As I’m all antsy for my job interview Monday, my therapist told me to list all the things I believe are my strengths.  It’s always been difficult for me to believe in myself and that I deserve to be hired, and that I have all the assets within me.  I listed some to her, but it was hard to sound confident and also truly wholeheartedly believe it.  I think one of the issues is that Asians tend to value qualities like humility, quietness, and Americans tend to view extroverted characteristics such as confidence, loudness, bolstering of your skill sets.  I know there’s somewhere in the middle where you can be humble but also relate your strengths and past experiences and apply them to why they should hire you.

Here are my strengths-

I was recently in the hospital and home-ridden for a couple months.  I didn’t give up though, and used the time of rehabilitation to work on anything I could continue working on, because I have a deep thirst for knowledge, because knowledge is power. My friend worked on developing a coding project in Python and had me test it out as a beginner so that I could learn as well.  I also had a series of books that targets all aspects of perspective, mindset, and more concrete concepts.  Some of these include Warren Buffet’s three favorite books on understanding stocks and bonds, the need to further develop empathy, a necessary quality dealing with human relations and interactions in terms of Quiet:  The Power of Introverts in a World that Can’t Stop Thinking.  I also read about the history of Pixar and the importance of allowing creativity and flexibility to let the workforce blossom successfully in Ed Catmull’s Creativity Inc.

Relating back to empathy, I read Birth of Korean Cool written from the perspective of a woman growing up in South Korea, which explains its impressive growth from a nation that is constantly taken over to the nation now that is expanding everywhere, with Korean dramas featured on Netflix as well as Netflix Originals, to korean skincare and products highlighted in Sephoras everywhere, and the rebranding of Samsung.  I countered that by also reading one of a woman growing up in North Korea, comparing and contrasting the two different Koreas and the experiences of those communities that share so many similarities yet are so different.  I also spent time to roam on human rights issues such as the Syrian refugee cause, environmental waste websites and blogs, as well as developing my passion for linguistics by practicing a bit of spanish and korean on phone apps each day.

  1. Hungry and driven for more knowledge and growth
  2. Very disciplined and work-oriented
  3. Developed interpersonal skills at customer service jobs where I learned to develop skills at approaching or interacting with clients
  4. Balanced in terms of technological aspect of job as well as human aspect, both of which are important in a work environment

My greatest weakness (if I had any ohoho) is that I can get a bit stressed about projects and deadlines, but that is because I highly value my work ethic and take it seriously.

That’s all I can think of for now for my self-reflection.

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.

Retreat: Testimony

Wow.

So I forced myself to drive out to the university where spring retreat was being held- I had seen many pictures of this place in all the pictures I stalked when I first befriended my fellowship friends last summer so I was curious to check it out.  The night before, my anxiety kept me up all night with me knowing I should show up at a respectful time to participate, especially since I felt guilty that I had not paid anything and had not planned to come, much less stay.  Nobody knows how hard it is to push the small part of yourself through all the anxiety and fear, simply to challenge yourself to be present in the experiences of life, no matter what they are.  Something so natural to someone else, like looking forward to how fun retreat is, or a vacation, is stressful to me no matter what.

Anyway, as usual, there were things I was not too keen on, one of them being the Sunday message given by the pastor (more on that in another post), but one of the most crazy experiences this Sunday was testimony.  To be honest, I was a little apprehensive as the last testimony I witnessed was during their Thanksgiving dinner led by the pastor… it felt a bit forced and inauthentic, with every single tumor that disappeared, every mini good thing that happened, resounding in ‘PRAISE THE LORD.’

I thought it was strange that testimony was scheduled for more than an hour as nobody spoke for the first five to ten minutes.  However, slowly but surely, one by one people went up to speak.  These felt spoken from the heart.  One kid was in high school, and he talked about how he felt he was in a dark place, and was depressed that he wasn’t getting good grades.  He said he knew that it might get better, yet he might regret if he didn’t speak up about it.  Another who really got to me was Donna, Bobby’s mom who lost both her father and her husband AND got cancer all around the same time… nuts.  She apologized for being difficult to be around and also spoke of her pain and gratitude for the kids especially.  It was really hard to listen to her, but I felt her suffering, and a couple people were crying with her.  It was so real, and I was almost tempted to go up and talk about my experiences too, except I still don’t know if I’m completely convinced of the beliefs in the bible and I still question a lot of things… but I do wish I have the courage one day to speak up, and at least talk about my personal experiences or give a word to encourage others, especially the younger kids.

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.

Navigating a Social War Zone

Today, I was describing to someone what I experience suffering from social anxiety in particular.  I went to my friend’s BBQ July 4th weekend just to try something new for myself, and found myself somehow returning for their weekly fellowship.  While I’ve had a great time getting to know everyone individually and as a group, the first few impressions of figuring out the relationship between everyone is both interesting and stressful.  This is the time again when you get a fresh start, as in high school, then college, study abroad, networking, building relationships and new friendships.  Each person is also probably on their best behavior and feeling each other’s vibes out, and I’ve been trying extra hard to push my introverted self out to make those connections, throwing myself out into the abyss and trying not to worry so much.  But really, it’s a bit like navigating a social war zone… you don’t want to come off too close and eager or clingy or desperate, but also you want to be friendly and confident and personable.  You don’t want anyone to think you’re over flirty or crossing boundaries to someone they might be having a thing with, and because you don’t know any better, it’s pretty difficult.  I don’t want to offend anyone but also be open about my thoughts and my personality, I want to be friends with everyone but not awkwardly ask for phone numbers or seem lost, crazy, prude, or whatever else judgments.

Also, everyone is just so damn friendly and there are so many guys at this church that it’s hard for me to tell if that’s just the way it is. Regardless, I’ve just been riding the wave, suddenly I’m invited to multiple events each week, I had the best time chilling in their town and church, and definitely feel the warmth of a community that is rare to find.

All I can do is keep faking it till it’s real.  That’s all for now.

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.

 

Mrs. Schultz, My First Rooftop Party, and Other Musings 03.16.2016 Wed@12:11am

I used to write all the time, and to this date have acquired over 10 journals/diaries.  It was my first homeschooled teacher, Mrs. Schultz, who instilled a deep sense of vocabulary, reading, writing, and the English language for me.  I think she was one of the people who I was too young and naive to truly appreciate, and I wish I could let her know right now how thankful I am for her influence.  She loved me as if I were her own granddaughter and tutored me since I was 5 years old.  Even after I was okay enough to attend school, she would periodically take me out to Burger King to talk, and I could feel strangers’ eyes on us as if I were her adopted Asian relative.

As I grew older, I wanted to put some distance between me and all the people who were a part of my past, because I wanted desperately to escape my rough upbringing, thinking when I reached college, my health would magically bounce back to norm and I could forget about everything that happened.  I didn’t feel like I had a sense of independence, but she nevertheless called me on my birthdays, and for three years even sent me a pearl to add to a pearl necklace to represent each passing year.  At some point, I heard that Mr. Schultz grew very sick and passed away.  Eventually, at some point in high school my mom told me that Mrs. Schultz herself was also very sick and hospitalized.  Her daughter Donna wasn’t too healthy herself, and I remembered thinking it wasn’t fair that such a wonderful family had to suffer so much.  However, all the negative news only pushed me further to stay away from them as I felt I hadn’t come to terms with what was on my own plate.

A couple years later, my dad and I attended Mrs. Schultz’s funeral, and I had no idea how to act.  It was my first funeral, and I had not stayed in touch with her for so long that I didn’t really feel the full effect of her passing.  Bewildered, I showed up and her son greeted us at the doorway, telling me that I meant a lot to her, and I stuttered out, “She meant a lot to me too,” not sure if my demeanor was appropriate enough for the occasion.  When the speaker encouraged us to share stories at the podium, I couldn’t bring myself to say anything, partly because I didn’t want to handle any emotions, and partly because I am terrible at public speaking.  But I’ll take the time now to say that I understand now, almost 20 years later, how lucky I was to have had someone who cared so deeply for me and my education.

I’m glad I also recognize how amazing my high school counselor was for going above and beyond to help me with notes and anything else I needed, for showing me compassion and defending me against other teachers.  I sent her an email the past Thanksgiving to thank her, and she was elated to hear from me.

That’s one of the silver linings of my condition- I like to think I see through everyone by the way they treat the ones who are “down.”  And I like to hope that I am able to make a positive impact when I am able in any way I can while I’m here on planet earth.

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The entire week, I had been incredibly stressed out about the invitation to my friend’s rooftop birthday in NYC.  This happens to me almost every time I’m invited out somewhere:  the contradictory feelings swarming in of both elation to feeling included and wanting to be there for my friends as much as I could, but simultaneously feeling anxiety and uncertainty of whether I could go.  I knew if I didn’t go, I would be safe and rested at home, but full of disappointment as if this was proof that I couldn’t go out like a normal young person.  I knew if I pushed myself to go, I’d have social anxiety and probably come across some obstacles, but no risk no reward.  I also knew the next day my family and I were headed into the city again to watch Les Miserables, and I always need the next day to rest:  could I do it?

I asked just about every single one of my close college friends to go with me, but they were all busy or uninterested.  Finally, two days before one of my high school friendquaintances said she and another friend were going via train, and I felt comfortable enough with them, knowing we used to hang out a bit and they were really sweet.  So, it was decided that I’d go with them into the city, and I outlined a very specific plan as I always do when I travel, which I learned in Taipei to specify the total cost, travel time, walk time, down to a T.  The trip turned out to be really enjoyable!  Affinia Hotel for the pre-game portion was literally a two minute walk from Penn Station, and there were no stairs, only an escalator up from the train tracks this time.  We took pictures, and I got tipsy enough to talk to new friends, and then around 9:30pm the three of us Lyfted for the first time over to Monarch Rooftop Lounge.  My ride was under $10, so it was free, and our driver was ridiculously nice and it was so convenient!

At Monarch, we took some more photos and each ordered a drink.  A bunch of other guests showed up, and I talked to some but not enough to really get to know them.  It was really fun, although the outdoor portion wasn’t as lovely as we had hoped since it wasn’t technically warm enough, and half of it was enveloped in some greenhouse, and so we huddled under red heat lamps when outside and then ran indoors.  I wish I was brave enough to network even more, but I still had a lot of fun.  My dad was supposed to pick me up by himself to give me some space since I’d been home with my parents for eternity and I really wanted a night out alone, so I was really upset when he brought my mom along.

My insomnia wasn’t any better that night, and the next day we headed into the city with me in a sour mood having cried and barely slept, eaten or drank much since the night before. I was exhausted, but it got worse when I realized this theater was old school and had no elevators… I hiked up probably around 3 flights or stairs, and felt extremely claustrophobic.  I felt like I was going to pass out, and at intermission, I couldn’t take it anymore and realized the line for the bathroom was snaking all the way down to the first floor.  I felt so fatigued I started crying and freaking out again, so my dad took me out across the street for some air and to eat at Junior’s.  I felt like I had failed, and I felt incredibly guilty for making my dad miss the second half of the show.  However, my family was really patient and kind, and afterwards we just chatted and I calmed down, sipping my sugared iced tea to get rid of the lightheadedness.

On the bright side, these theater tickets were brought on Groupon so they were only $35 a piece, and the play wasn’t amazing, so I wasn’t that impressed.  I just figured, it’s Broadway, shouldn’t this be the best of the best?

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My last musing is that I like it sometimes when people get mad at me.  Now, hear me out first.  It’s never fun to have anyone angry at you, and personally I get a very worked up and antsy feeling to quickly resolve the issue because I feel physically bothered when I know I messed up and hurt someone I care about.  But now that I think about it, I probably have gotten mad or gotten into small fights with everyone I really cared about.  Why?  Because they were worth it that it affected my mood.  I have high standards for friends and family, and sometimes it may seem like too much of an expectation.  But one time, my friend was upset when it seemed like I wouldn’t be able to make her party, and I remembered feeling kind of well, happy about it.  Because it meant I mattered to her, and that I was wanted and would be noticeably missed.  I think one of the best feelings in the world is to know that you matter to someone.

Also, I’m totally aware that my categories in this blog are not organized yet, I’ll need to find time to sit down and properly fix all that.

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.