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.

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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.