The Calm Before the Storm

03.14.19

I’ve been oddly peaceful lately… in some ways, this is preferable to crazy anxiety and insomnia, but I wonder if some part of my brain has become dumber and switched off an activation code lately.  I’ve reverted back to the days of a 7 year old relying heavily on their parents to feed them, get them things, and spend time with them.  It may be a coping mechanism, but it could also be that I have resolved on my plan for this year and just need to map out the kinks and details at this point.

For example, I am a Medicaid patient, and I had called them recently to get more information.  This week, I was sent three letters and packages in the mail from them, not small by any means.  These packets included a living will, a case manager they offered to assign to me to help me with all this confusion, and another enrolling me in a pulmonary education program.

Here are some things I really want to change in our healthcare system as well as disability assistance in common places such as work, our community, and our cities (I’m looking at you, NYC).  We should always have the automated doors, we should always have elevators or sloped walkways, especially when that poor mom fell down the stairs trying to carry both a stroller and a child alone down the subway.  These are two of the most basic disabled rights that I can think of off the top of my head, although I also think it would be totally fair to make offering straws illegal unless a disabled person requested one.  Even though disabled rights have improved over the years, we are still so far away from what is actually fair and equal.

Five years ago, I similarly went through rigorous research, but that time, my desperation and panic led me nowhere.  I messaged Harvard professors and emails prestigious sounding doctors, of which I remember one advising me sternly not to to seek any stem cell therapy centers, and to insist that I get a lung transplant.  To me, a lung transplant was the epitome of death.  Now, it is a chance for hope and a better future and quality of life, even though death is still there in the picture (I am actually going to be diving into the outlook on death for my next therapy session this week).

03.16.19

I’ve been on Youtube a lot lately and watching mostly mukbang videos, The Voice, and World of Dance clips.  But in between, I also watch Youtubers who share their lives in living with a disability, and there’s one channel that features an inter-abled couple.  I always felt like a part of me was more enlightened and more patient, and kinder, and understanding because of everything I’ve been through.  But a part of me also understands the comments that are incredulous, sometimes borderline mean, that ask how such a couple exists and is okay with handling the “burdens” of care-taking.  I think maybe a fear of mine is that even as a technically handicapped and sick person, I still hold prejudice and still aim to separate myself from other disabled people.  I remember one time in college, the Office of Disabilities told me I could hang out with the other freshman kid who was in a wheelchair.  I also remember feeling resentful that I was by default, lumped in with the other kid as if we were the same kind, and also resolving to do everything I could do to fit in with “normal” students, and not associate myself with him.  Some time later, I remember seeing him walking by, us making eye contact briefly, and me thinking he was pretty cute.  Eventually, he was walking by on a cane and often accompanied by an attractive girl, and I felt pretty ashamed for ever disassociating myself from him just because he was in a wheelchair.

I love my mom and dad, but to be honest my childhood was difficult.  My mom was always stressed out and this caused her to be very impatient, often getting angry with me for things that were out of my control, like having a poor appetite and not being able to finish meals, and eating slowly, and needing her to drive me to school everyday.  Looking back now, I am much more understanding of her experiences and struggles in raising a different abled kid, especially when neither of us really understood it, and she was already dealing with a lot of personal, separate problems. I guess despite my understanding her especially now that she is a lot more patient and calmer and we communicate more, I fear that I would be the same type of parent or girlfriend,  I would still run away or deal poorly with any signs of hardship that wasn’t solely my own.

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A Wise Woman Once Said…

Aka my therapist.

One day I was rambling about my insecurities and how anxious I felt by what other people thought of me.  I was probably describing one of the many moments in which I used a handicap spot or some other form of assistance, while aware of someone’s eyes on me, observing, probably judging whether I was abusing the system or just straight up not actually ill.  My paranoia was always getting the best of me, and it’s a very vulnerable feeling, when someone’s singular subtle action or movement could destroy you in a breath.  Why do we let people control us like that? Why do we tend to care so much what other people think?

My therapist said to me at this point, that I was battling two things.  The first was the very real struggles I deal with, emotionally and physically, the things I can’t fix, factors completely out of my hands.  The second was myself, and very fixable in how I perceived, intercepted, and reacted.  It was so cliche, but the way she said it clicked for me.  Why was I creating an extra layer of struggle when I had enough to juggle on my plate?  Wasn’t it enough that fortune or people made life difficult, why was I piling on more for myself?  It was just extra, useless energy.


These were the reasons why I posted on IG and confessed publicly for the first time in my life what I was facing, the burdens that I kept buried for so long.  What was the point of keeping them secrets when this was fate and things were going to happen the way they were going to happen regardless?  In the grand scheme of things, did it really matter who knew and what they said and thought?  People will think what they want to think at the end of the day.  And when we reach this point, the end, there really is nothing much else to lose.  I’m surrendering it all by laying it all out before me.

I think more and more on what imprints I’ve left on this world.  What is it that I want to change, and how is it that I want to be remembered?

A vaguely terminal illness will bring this mentality to the forefront, especially when I’m feeling the real effects and symptoms on my body.  I broke down so hard last week that I felt like there was probably nothing left in me to go on.  I felt forgotten by the rest of the world, and wasn’t sure at this point it really mattered if anyone did reach out to me to tell me otherwise.  My mind spiraled so deep into a really dark future filled with more pain, repetitive suffering, a never-ending uphill battle, where no matter who else talked to me, I was the one who would have to go through it alone, the demise and suffocation, feeling the slow burn failings of my inner workings.  I didn’t want to go through it, I wanted to halt the brakes, but I couldn’t do anything about it.  I was tired of my mom coming in to help me with every single thing, I was tired of feeling like I was inhaling only 10% when I needed at least another 40% more oxygen through my airways.  I was so sick of my heart rate speeding up over 140 bpm if I so much as sneezed.  I guess I felt dead inside.

I called a friend, even though I felt so dead that the majority of me didn’t really want to see anyone or contact anyone.  If I passed on, people might be a tad sad for a bit, but at the end of the day, people would move on, and that would be all.  My friend miraculously cheered me up by staying optimistic and upbeat and keeping some part of me in the realistic loop of the rest of the world’s rhythm, about work, and driving home, and eating, and other mundane tasks.  We talked about stupid things, and the distraction definitely pumped a bit more energy back into me.  Things would be ok.  At least for now.  I would make it through, at least this time around.

STRESS: Blegh -not-feeling-grateful Days

I want to write a wise journal entry today about how I’m thankful that I have a roof over my head, food to eat always, and my family, friends, and still some independent ability, but all I feel is negativity.  Not depression at its worst as I’ve felt before, but on a scale of happiness, it definitely drooped more.  Especially considering it’s summer and should be the highlight period of my year.

Let me jolt down some actual and pessimistic thoughts and conditions lately:

  • I felt very frustrated and angry that someone at work falsely accused me of abusing my grandmas handicap placard to HR. First off, one grandma is deceased and the other is halfway across the world.  I felt very wronged and misjudged, and not even able to confront the situation as I don’t know who reported me.  I felt angry that with all the shit I’m dealing with, I have to justify my legal use of trying to help myself out and make life just a tad easier.  I also would rather not be short of breath and constantly exhausted that I have to take a poorly paid part time job. This incident has made all my other issues affected by my illness amplified, and I am aware that I am in a poor attitude mode these days and have been very short tempered with my mom, and barely tolerating incompetent or creepy people at work. Guilt- the definition of feeling and hearing someone’s elses feelings and thoughts louder than your own, and them fighting in your brain.
  • Leading to my next point, I also would rather not have to go to Upenn every single month and do a bunch of unpleasant tests like bloodwork, cat scans, following up and scheduling with doctors, going to a psychiatrist, therapist, taking 10 diff kinds of meds each day, and also having other symptoms exacerbated by my weak body.  Trust me, I want to appreciate my body that I have one at all and appreciate any functions it does have, but right now, I just want to complain about all the bullshit I deal with.
  • Relationships and Weddings:
    • Everyone around me is in or getting into a relationship, and it feels like their lives are all planning or moving on towards the next step:  moving in, getting engaged, getting married.  I want to feel confident in my singleness, but I don’t.  It’s kind of gotten to me and made me feel left behind even more so in all the other ways I feel left behind, and I wonder if it’s me or just the circumstances that I happen to not be in a relationship.  I went to a bbq this past weekend and literally there was only couples there, besides me and my bestie.  Possibly 3 other single people, out of 30-40 people.  Also, my friend is planning her birthday, and my entire friend group asked if they could bring their significant others.
    • Making the “left behind” feeling worse, I realize that while I am grateful to be a part of anyone’s lives at all, I also feel shitty that some friends I thought I was at least decently close with in college haven’t invited me to their wedding- I was told not to take it personally, but it just reminded me of all the times growing up and in high school where I struggled to find solid friends, and how I was always the one on the fence that people thought of maybee inviting to their parties and events.
    • On the other hand, it made me worry even MORE that if I were to be chosen to be part of someone’s bridesmaid or maid of honor, would I even be up to the task?  I may be too busy taking care of my health to even make it to their wedding or event, and that makes me unreliable (my health, but aka me).  It’s not fair, and I really want to do those things for one of my friends.  And my best friend isn’t even planning on dating or getting married, so I don’t even get to 100% be someone’s maid of honor -_-
    • I’m thinking, am I going to literally live with my parents and depend on them forever?  For awhile it felt like that was an okay situation, but then my mom would say little things here and there that would add up, and make me feel a little nuts and wish there was some space between us where I could have more independent choices, and not constantly have to put up with another opinion on my clothes, etc.
    • I had a major headache at the bbq this past weekend, and so I didn’t enjoy myself or socialize much with anyone at all.  It was all I could do to be present at the bbq at all.  I was so tired and just wanted to be out of the house and have a break from my house and parents.  I went to Upenn today, and had a fever of 99.8, and even though my cat scan shows that the cavity walls around my hole in my left lung is thinner aka less inflammation, the lungs have slowly but surely been progressively deteriorating.  So it’s like I’m falling down a giant decline on a mountain and this news was just a slight rock hop before continuing screaming and falling down the decline.
    • I want to break down and cry, and I feel all this pressure and tension inside my head and my neck and shoulders, but it’s not coming out.  It’s stuck.  I had an upset stomach and also my nose started bleeding again, and although it’s a bit dramatic I feel like my body is falling apart all over the place.  I literally just fixed my yeast infection and eye dryness.  There isn’t even anyone that I can target all my pain and anger at, that I can just direct a giant “FUCK YOU’ to.  It’s just luck, fate, whatever.
    • Trying to be mindful of human nature and not getting too greedy with what I want.  Two months ago, my main goal and source of happiness would be to just get hired for a job, any job.  Now I’m tired of it and finding the work very uninspiring and feeling like I’m undervalued and just doing bullshit repetitive work.  I suppose this is normal, and at least a “normal” problem to be stressed about.  But then I think about what could’ve been, how far my potential could be, and how I will probably never know because I am constantly being limited by my body.

Wizarding World of Harry Potter -Feb. 6, 2018 Log (Pt. 2 Tuesday)

I have to say, this is probably the second best vacation I’ve ever been on:  I had the best solid sleep I’ve had in about two years last night, and everything is going well.  I had proper rest, we live in a great hotel, the weather is perfect, and we got to see the second half of Harry Potter Diagon Alley in Universal Studios today – I think I can add today as the fourth happiest memory I’ve had, with the first being in Taiwan with study abroad friends, the second being throwing a surprise party with kids for my co-counselor, and the third being sitting on a gondola in Venice.

I guess part of what makes it so happy too is going through what feels like hopeless hell, everything going wrong.  Today, everything went smoothly and right, which is rare.  No regretful feelings, we got to do pretty much everything.  I had a solid 9 hours of sleep, we woke up at 8am to get to the park, and rode every ride and saw every inch of Harry Potter World (besides the Hogwarts train but it’s seriously ok cause the rest of it was that awesome), I got Florean Fortescue’s strawberry-peanut butter ice cream, got my Gryffindor quidditch shirt in kid’s size, got my Hogwarts keychain that I regretted not buying the first day, my mom got her turkey legs, we saw the Mardi Gras parade AND managed to squeeze in E.T. in the last two minutes of the day.  We took a few pictures at the exit and I felt confident to take a photo in my wheelchair.  Yes, my wheelchair.

I dreaded this wheelchair forever, and the first day I rode it I had moments where I felt like my life was falling apart and I was becoming an even more useless, dependent person.  I brought not much joy due to my depression to others, I was physically weak and easily fatigued, I did not even bring much income in, I felt like I could barely help myself:  I felt worthless.  And truth is, I will probably feel frustrated by all the limitations again many, many times over, but I realize that accepting the help of using a wheelchair made my quality of life 10x better. I was no longer so fatigued and uncomfortable that I could not properly enjoy whatever we were doing, and as the second day, I got used to stares more and even stared back happily.  I guess it’s still different since I don’t know anyone personally here, so I feel somewhat less self-conscious.  Props to my parents for wheeling me around all day, I am amazed at how fast regular people walk without tiring!  The speed they go at is like a mild superhero speed compared to my own.  It saved us a lot of time too not to have to rest every other minute.

I have to say, to date I highly enjoyed both Harry Potter rides, I also enjoyed the Jimmy Fallon ride, Transformers, and the Incredible Hulk were the highlights.  The amount of blessed feelings and happiness I experienced in 4 days so far seems to make up for how shitty I’ve felt the rest of the past year.  To simply be able to accomplish more than I can brings me great elation and then I feel very satisfied and full.  I’d rather have one great vacation than 2 shitty ones where I feel sick the whole time.  Wheeee.  ^_^

Here’s to hoping the last day is a solid one as well.  I can probably live off this good vibes week for quite awhile, maybe it’ll last me till spring?  Fingers crossed.