Disney + Worries

So… my family is planning a trip to Harry Potter World and Disney and I’m simultaneously excited yet super anxious.

The biggest hurdle is that my therapist suggested that I start using a wheelchair of some sort so that I can avoid becoming exhausted to the point of major discomfort and fatigue, and tense muscles.  I had never considered using a wheelchair before, and the hypocrisy that is me, is that when I see other people in wheelchairs, I don’t think much of it, yet when I think of ME in it, I am riddled with a million feelings: perhaps

Shame, that I have to submit to a wheelchair and can’t make it on my own two legs,

Guilt, that I don’t really deserve to use a wheelchair and am a “fake” illness person (doesn’t help that tons of other people have doubted my illness over the years), and that my family will have an extra task to do in pushing me around,

Embarrassment when I have another extra thing to make me feel different, and perhaps

Relief and Hope too, that this might be much better of an arrangement for me energy-wise, if I could only wrap my head around accepting it.  The truth is, my whole life I’d lived in the mindset that my lungs were going to eventually heal and become “normal” when I reached adulthood aka college, yet I was slammed with the ugly reality when I switched over to an adult doctor, who told me I should be prepared for lung transplant evaluation instead.

My whole life, I’d been competing with people functioning at full capacity, when it was literally not possible.  And even after the sad realization, I could not bear to face the reality that it was, and continued to live in doubt and silence.

After a few years of therapy now, which I started on and off 3 years ago, I think I’m becoming better at shifting my perspective to a more positive one, but it’s still a really long and bumpy road.  I have to expect that most healthy people, especially ones at my age, will simply not get it, or even have the patience to try to get it, because they have their ableist privilege, and all I can do is control my own mentality.

The list could go on forever for all the rough moments in my life when other misguided people mistreated me and misunderstood me, believing I was taking advantage, or lying, “playing a victim”, or one thing or another, just because there was no visible evidence in their eyes.  And it caused me to continue to doubt my own capabilities and limits as well for a long time.  But now I realize that you do not let other people’s ignorance hurt your own knowledge and perseverance. You are not any less just because you were given less spoons.

I have to learn to forgive people and move on, because for a long time honestly, I’ve let myself get caught up in the unfairness of it all, and the rudeness of others causing me so much hurt and pain.  No more.

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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.

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.

 

 

 

A Small Achievement

Letting go of pride.  A lot of self-care and confidence is reframing how you feel about yourself, and letting go of pride enough to realize that you can still retain your dignity even when you feel you’ve lost it.  As much as I tell others that sharing and revealing a part of your soul makes you feel like you’re vulnerable like an open,  bleeding wound to others, it’s part of what makes you human- the first part is letting others know what you’re going through so that they can help you.  The second part is that despite our worst fears that we look silly or weak, I’d say 95% of the time, you just simply earn more respect for speaking up and being open in the first place.. it increases trust, and you are a leader in paving the way for others to see your imperfectness, so that they may allow themselves to become vulnerable too and share.

Yesterday, at girl’s group, I took out my inhaler and used it, then joked about gargling.  All of them watched me, and asked me questions about it, especially the ones working in hospitals.  I was feeling confident, or rather, content, and somehow that made it feel safe and okay to talk about my inhaler and not make me feel like I was isolating or making myself look like a sick person.  And it felt good.

Ironically, letting go of my pride made me feel proud.

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.

Fears

My deepest fears?

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

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

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

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

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

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.

Why “Aw” Responses are Unacceptable | On Racism in the Workplace

I’ve met up with a few friendquaintances from the past just cause, why not?  Most of my high school phase left me with friendquaintances, and I felt I never had the chance to properly get to know people and who they really were, although I had a vague idea by the way they treated me or handled my extenuating circumstances… I used to think they were just all jerks, but then the more forgiving part of me knew it was sometimes due more to immaturity and ignorance.  To be honest,  I wasn’t sure if it was due more to my willingness to be as spontaneous as I could be when possible, or whether it was my insecurities that questioned why people would ask to meet up out of the blue when they had never bothered to get to know me before.  Sometimes, my inklings were correct and I felt there were ulterior motives, but who really knows at the end of the day.  My paranoia has I suppose, in many ways been both a blessing and a hindrance to what could’ve been.

That said, some people, four years later, may still not have had the chance to learn how to handle with respect more dark matters.  When one hears of the passing of someone’s father or mother, for example, one automatically says “I’m sorry.”  I always feel awkward getting those words out of my mouth, because it feels so utterly futile in what pain they must be going through, but it’s the least I can offer in the moment.  But at least it’s a consistent fallback to what people say to display their empathy.

The other day, I met up with a friendquaintance who asked me to chill and catch up, and I thought why not.  Suddenly, out of the blue from small conversation of “What have you been up to,” he followed up with, “Weren’t you always sick or something?  What is that?” It caught me off guard because I hadn’t realized he was one of the people who were even vaguely aware of what I had gone through back then, and I awkwardly tried to give an elevator explanation of what I had.  In response, he stared at me and gave me a pouty face.  How the fuck was I supposed to answer a pouty face?

Let me go on a momentary rant here, and tell you why I get so fired up by people’s responses sometimes.  Let’s put aside for a couple minutes the goal to forgive, and understanding that they don’t know shit about your life so you have to let it go.  When someone tries to explain to you an illness or a condition that wreaks havoc in their lives on a daily basis, from the minuscule to the grander schemes in life, it takes bravery just to try to bother telling you about it.  If someone asks you for some assistance sometimes as simple as a lack of judgment when they use the elevator or ask you to wait with them, you do it.  People of chronic conditions in society are marginalized, disregarded, and misunderstood just as people of color or ethnicity or gender are.  At least have the decency to study or look up on situations that you yourself don’t experience so that you don’t go spouting ignorant things.  So the next time you happen to interact with someone who has an illness or struggle with issues you don’t have, particularly ones you can’t see, don’t go pitying them, particularly slapping them in the face with an “Aww,” or saying something like “At least you don’t live in a third world country.”

Listen, if someone blind were trying to explain to you what they deal with as a blind man, would you respond to that with any of this?  Then why is it so difficult to apply that to other varying conditions as well?  

Do:  Ask them more questions to understand if they seem willing, or just be there for them and be chill about it without making them feel like they owe you a favor or that it’s a big deal.  They are people, just like you.  We are people, just like you.

I think part of me is a quiet Asian girl, and that’s okay that that is part of my personality and identity.  But it’s really frustrating when people seem to pigeonhole you into expecting you to act a certain way, submissively, for example, when you aren’t meant to just roll over for them.


This leads to my second point of discussion, and I wanted to share this story my best friend told me today about racism in her workplace.  Besides tolerating her co-workers’ often inappropriate comments that are borderline, or far past borderline sexist, she has a double whammy in which she also has to endure racist comments, particularly from white co-workers.  Today, she told me that her and another co-worker were talking to one of the company’s managers,  trying to remember what some Asian guy’s name was that they had met.  When they were at a loss, the manager actually said,  “Well, maybe it was something like Ching Chong Ding Dong eh?”  When my friend failed to laugh, he pressed on,”Well, I think it’s hilarious.”  My friend finally snapped and said, “I think you should leave before you make a bigger fool of yourself.”  Apparently, he just left after she said that.  Zero tolerance for that kind of behavior is right, even if it means standing up to someone of a greater authority than you, but I don’t know if I’d have the cajones to do it.

The Principle of the Matter: Star Wars @ RU

Summary of the day’s events:

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

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

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

—————————————————

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

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

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

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

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

 

 

My Story Now in Insomnia: 19%

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“But you’re such an inspiration!”

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

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

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

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

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

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

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