How to Take Control: The Parallels in Piano and Chronic Illness

As an INFJ, I am often more prone to thinking with my heart than my brain.  Oftentimes, my emotions overran calm logic, but as I’ve grown older, I’ve aimed to create an equal balance between the two in order to lessen anxiety.

Even though I had a difficult piano professor in college, I did learn some really important lessons that I applied to other aspects of my life.

One of the major things she taught me was that I was in control.  The piano doesn’t play you, you play the piano.  Often times, I would attempt to let my fingers fly across the keys, in my younger years depending heavily on muscle memory.  I learned as I grew older that developing a method of 100% precision is not possible with just muscle memory- while useful, the mind is prone to blanking out, especially when overwhelmed onstage with a thousand eyes on you. The only way to ensure no memory fumbles is not to rely on the memory.  Instead, you must perfect control over the keys, and that means studying each note, individually, as each finger plays one and expectantly lands on the next, not just through muscle, but through mind.  In conclusion, sometimes “winging it” is not the right plan – sometimes, you just gotta prepare as much as possible in as many concrete ways as possible.

When you focus your practicing, you are also wasting precious time and efforts if you are playing a piece from beginning to end over and over again aimlessly, with no conscious intention on what particular segment needs to be fixed, or breaking it down by specificities:  what is the greatest technical pattern to practice in this section?  What is the tricky fingering in the left hand here, and do the dynamics between the first and second contrast each other well?  You practice intention as much as the physical action itself, which means you can greatly improve performing your piece by listening to 10 different artists’ recordings and interpretations, studying the pages away from the keyboard.  Basically, exercising intent and logic is just as important as processing your emotions and feelings.  

So that’s what I’ve been applying to in terms of the management of my chronic illness.  Both onstage and offstage, I am susceptible to bouts of anxiety and panic attacks.  There are factors both in your control and out of your control, and the most you can do is prepare to the best of your ability what is in your control, the rest is out of your hands.  What have I taken control over?  I guess I feel the culmination of all my work leading up to this point right now.  I’ve felt overrun to a pulp by all the insurance crap because there are so many complicated pieces to it and it’s confusing af.  I’ve felt completely overwhelmed by the whole decision making on my quality of life, the goals I want to achieve and the health problems that are obstructing my way to those goals being achieved.

As a feeler, I don’t really have much problem talking about my problems and connecting to others emotionally and empathetically.  I actually may have too many feelings for my reservoir for feelings, so the first step in this journey was to control that to the best I could, which led me to a concrete plan of:

  1. Therapy – I have anti-anxiety medication which has helped tremendously despite my hesitation to take it. It has maximized my productivity to tackle shitty feelings when shitty things occur along with boring, complex adult things like insurance, and more emotional control so that I can put more energy into more motivation and focus on completing tasks that are rarely fun or exciting, but necessary.
  2. Education – I have spent a lot of time to inform myself as much as possible on whatever the problem is.  When you have a greater understanding of things, you have a better grasp on things, and therefore will lead to less anxiety.  I have poured hours into reading up on lung transplants, statistics, and asking questions on the internet and to my transplant team, who I trust very much, with my life (literally).  Just like organizing and breaking down a piece of music to conquer it, I have taken time to reflect on mini goals and research.  What are the risks, what is the medical process, recovery time, what can I expect in the beginning, middle, and end?  What are the finances in terms of insurance coverage, who is my support team, and what are medical opinions on how I’m doing?
  3. Non-Medical Goals – social life, family and friends, other goals like work/career, travels, relationships, personal habits and new skills to learn, what are my priorities and how do I break down the steps to achieving them, one day at a time?  What are my passions, what is my mission in life, how do I want to impact the world?

While playing with heart and passion is always an important factor to your success as a musician, conveying emotion also requires technique and technical methods to break it down efficiently.  So here I am, trying to meditate a bit and bring in some calm, and today I completed some insurance tasks.  To give an idea, here are some of the things I did today:

I liaison between my dad’s company adviser, my dad, and my therapist, the insurance company, and my physicians to produce a letter and other documents proving that I should stay on my dad’s insurance plan after the age of 26;

I called my insurance company’s behavioral health department to confirm the steps to receiving teletherapy care with my therapist;

I sent in a request to the insurance company to update my PCP for a new card;

I reorganized my list of medications and verified their approved pick-up dates with the pharmacy, also re-ordering one of them.

I proceeded to watch Hasan Minhaj’s correspondence dinner on Youtube, began reading a new book (“The Bonesetter’s Daughter” by Amy Tan), did my daily 15 minutes of Korean, spent some time chatting with my best friend, and am now going to clean out my bag and organize everything.

The greater process requires equal parts to yield optimal results.

Be your own fucking boss.  Get in control.  Even if often times, it doesn’t feel like it.

 

 

Advertisements

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.

Adulting

Hm… so I still feel like I’m behind on a lot of things, like understanding how taxes work and what the right kind of skin ritual I should be doing at night.  But I do feel like I’ve come a long way since college.  To be frank, in the past two years I finally wrapped my head not only around therapy, but accepting that I could use medication to help with the crazy amount of depression and anxiety I had been struggling with.  I felt like I was mentally drowning so much of my life that it almost made me accept that this was the norm, and that either everyone else around me felt the same and was just handling it much better, or that I was very different and there was something wrong with me.

I still feel emotions of course- sometimes I get a bit down or upset, sometimes when I focus on my health and how different my life could’ve been if I hadn’t gotten ill, where I could’ve been.  But it’s nowhere near how I used to feel- hopeless, trapped under this giant heavy cloud that was drowning me of any ambition and motivation.  It’s therapeutic to write on here for how much of my mind is reflecting on the “negative” aspects of my life, which don’t play out too well with everyday conversation and interactions with people.

That said, adulting.  I used to feel completely naked and vulnerable whenever I had to ask someone for help, like talking to professors for understanding and assistance in my grades and absences that go hand in hand with chronic illness.  I used to feel my whole day ruined when I forced myself to trek short of breath anywhere:  to class, to the mall, just because I wanted so desperately to act as normal as I looked on the outside.  It was too much to accept how severe my health was, and that it would always be this way until it got worse.


I’m worried about getting ill and losing my job, it can make me panic to realize that my youth is leaving and my chances at a youthful life are slipping away, and even worse that these struggles will never leave- I have to simply adjust my perspectives.

But for now, I still have my job, I’m still learning to speak up about my health and reasonable accommodations for it without feeling ashamed or acting like a victim, and that so many things are out of my hands.

This week, my parents left for Taiwan.  I hope they’re having a lot of fun and enjoying their 60s.  That said, it does make things a bit harder for me, such as expending a more limited expectation on the mundane chores I have to take care of everyday- cleaning up after my dog, cooking, washing dishes.  But it’s nice being alone, so that I don’t have to talk to anybody, and I can do things at my own pace without judgment.  I rest when I have to, and give a bit of energy here and there to manage it all.  I’m trying to eat up all the food left in the fridge by myself before it all goes bad, so I’m stuffing myself with two bananas a day, eating perishable foods even though they might not be my cup of tea.

I went to UPenn Tuesday, and my lung doctor said the antibiotics appear to be working and the inflamed white lining around the hole in my lungs seems to be thinning out comparing it from April to August, which is great.  I do realize now that I’m getting closer to my usual baseline how it was definitely worse last year.  When I took deep breaths, the ceiling of my breaths were lower, so I got short of breath more severely and quickly, and as a consequence, I got more fatigued and uncomfortably short of breath/dizzy.

I was annoyed by this person who was administering my breathing tests, and he was super cheerful and when he opened up my patient charts, he was all “omg, I can’t believe you have severe COPD?? No way, you don’t look sick at all.”  I wasn’t going to say anything, but it really irks me when I get that.  So a couple seconds later, I told him “I mean, you can’t see lungs on the outside, can you?”  And he said that’s true.  He tried to make amends by saying that some people spiritually seem really low and defeated and carry it with their aura, and that I don’t. So I guess that was a slightly nicer spin.  Having these comments said to me always fed me imposter syndrome and made me feel like I was playing a special card to ask for help, because it seemed like rarely did someone believe me when I asked for help.  It’s really frustrating.

My friend from college came to visit me Friday evening, I really appreciate when friends make an effort to stay in touch with me, even if the time we see each other has stretched to a year apart.  I saw my neighbor/best friend briefly so she could help me eat some food in my fridge Saturday, then she encouraged me to go to the gym before it got even colder Sunday, so I did.  After I returned, I was again thankful that she gently pushed me to go while it was relatively nice outside (60’s).  And now, today is Sunday.  It’s cold, my nose is cold even with my sweater and socks, so I just start to feel lethargic and want to bundle up in a blanket and not move at all.  I’ve managed to be sort of productive though, and have made headway on cleaning up the bathroom and my dad’s room, and then eventually will put away my summer clothes in my room.  I’m throwing away my old pill bottles, making lunch, going to clean up the dishes soon, and then will go back up to finish cleaning and taking a shower.

My dad’s room is full of random things and it’s all over the place at the moment, which is ironic because he’s the cleanest in our house and regularly vacuums the entire house  down.  I know he’s been super busy and overworked lately, so I think now that I have energy to recharge this weekend, I am able to go and organize some of it.  My mom cleaned her room and my room before she left, so it’s nice because I am pretty crappy at folding the bed, and that takes more energy than other things.

I’m also busy cleaning up my dog’s poop, which is like 3x a day but feels so much more frequent.  When I have to raise my body in any sense vertically, like bending down to pick up her poop, I notice that it affects my heart rate much more than other movement.

Anyway, that’s all for now.

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.

Mundane Update on Terminal Illness and Such

It’s summer, and it’s usually where I’m doing relatively well, as well as I could be doing for my condition anyway  (COPD).  I have a part-time job that is manageable, and it’s as normal to normal as it can be – I have a set schedule of waking up around 8:20am everyday and coming home by 4pm to rest, eat dinner, prep, rest, repeat.  Even the pill popping at night has become a pretty standard routine that doesn’t bother me much. I stay busy physically and mentally, but then comes the visits to Upenn every month or so for fv1 testing, and sometimes it’s okay, some other days it’s less okay.  The past week, I’d been trying to obtain a note from my lung transplant team verifying the medical needs of staying with the same psychotherapist who treats me with anxiety and follows me on my chronic illness journey; we hope to get a single case agreement with the new insurance company.

Sometimes I get a bit of a panic wondering what it would be like with me surviving an illness that limits me in so many ways, financially, physically, etc. The only thing I can control is my emotions and mentality, so that’s what I’ve been trained to focus on.  What if my parents weren’t there for me to depend on?  Nobody else would care.  My nurse practitioner wrote me a medical note that I could give to the insurance company, and in it it describes me as a very young patient with severe lung disease and one with a “terminal illness.”  It was so weird to read that part.  She had warned me she would use some scary words to make her point across.  But what freaked me out later was the realization that she wouldn’t use it to straight up lie– it was at least true and relevant to me even if I felt like I was managing my day-to-days okay.  I am someone they all are monitoring to see when, not if, my progression starts to decline.  But again, I can’t focus on these thoughts because they don’t contribute positively in any shape or form.

For me to be questioned at work when I park in the handicap spot by a co-worker, these things feel so ridiculously unfair.  Yes, I don’t look sick enough.  But yes, in fact, I do not have a mild disease, but a severe one.  I am just young and able to fool people in the short term run.

To end on a good note though, this woman I’d been following who is just a bit older than me with cystic fibrosis (fighting2breathe) was severely ill, on the hospital bed for months in California.  And she received her second lung transplant and looks like she is on the way to recovering.  I am so happy and relieved, and hope that for all her suffering and strength, she is able to have the life she wants, with her husband and future kids like she hopes to have.  That’s her biggest wish, and yet most people around me take those for granted.

I don’t pray to be successful or have anything given to me:  I want the opportunities to be able to become successful on my terms, and the drive and determination to get there regardless.

Making Lemonade out of Lemon

Hella cliche I know.  But I was thinking about how the past UPenn hospital visits have only become increasingly difficult, with more doctors from different departments added on each time.  It definitely took off in the “worse” direction around the time I decided to do the lung transplant evaluation.  I was rambling to my friend about making lemonade out of lemon, even if it’s kinda shitty, just to make it edible enough is good enough for me.

I used to be someone who just kind of enjoyed bubble tea.  But now bubble tea has taken on a whole new level of meaning for me.  It’s the reward I looked forward to after my rough appointments and tests.  It’s forever going to be ingrained as a positive memory I will cherish, grabbing Mr. Wish with my dad or my parents, a ritual you could even say.

So with all the rough memories that are occurring in my life, I am still trying my best to balance it out with each visit ending in lemonade, even if sometimes it’s only barely edible.

Create your own silver lining?  It’s damn hard but I’m trying anyway.


On a slightly separate note, I think I’ve finally reached that point where needles don’t completely send me into a near anxiety attack.  It’s my 20th or something blood test/needle in the last year, and now I kinda just stare at the needle in disdain.  Still a bit nervous, but not nervewracking.  You just don’t know how strong you are until you’re forced to challenge yourself consistently.

Crisis Textline Self-care Assessment

Screen Shot 2018-06-01 at 4.29.44 PM

3     3

3     3

3     2

3     2.5

Screen Shot 2018-06-01 at 4.29.53 PM

3     4

3     3

4     3

Screen Shot 2018-06-01 at 4.29.58 PM

2     3

2.5   2.5

3     3

3     2.5

Screen Shot 2018-06-01 at 4.30.03 PM

4     2.5

2.5   2.5

2.5   4

2.5   3

Screen Shot 2018-06-01 at 4.30.08 PM

3     2.5

2.5  2.5

3     3

3     2.5

 

Screen Shot 2018-06-01 at 4.30.13 PM

2     2

2     2

2     2

2     2

Why am I doing this?

I’m embarking on another challenging journey, personal in a different way. The past year, I’ve stared my inner demons in the face and really tried to make active steps to overcome them.   Granted, I’m not completely over them or “fixed” now, but I can look back and say I’ve definitely grown.  In being more accepting of my circumstances, on accepting that there are things I can’t control and to focus on what I can.  In dealing with looming health issues and finding a community that I can connect with in a different way than my other friends can relate to.  To understand when a place is not contributing to my life in any positive way and to say no and allow that to be okay to remove yourself from it, having tried.

Now I want to challenge myself by confronting another part of myself that gives me a lack of confidence. This is the part of me that feels useless and like I don’t do enough with my time here.  And I want to see if I’m able enough to handle  and help with other people’s problems since I’ve been through so many unique experiences.  I want to be useful with my time and intentional in my actions.  And hopefully I’ll grow from it too and learn more about myself along the way- my capabilities, my limit for compassion, my ability to be empathetic.

 

Self-Stress Management vs. Life Worries/Burdens

I don’t pretend to be a stress management expert, but I definitely have a lot of experience in stress and anxiety.  In comparison to how constantly overwhelming it used to be, I am much better now, but it is not about generally less problems, but more about being aware of your feelings and where they’re coming from, and then processing your feelings in a more helpful and productive way.  Sometimes, understanding if the problem is yours or someone else’s is useful in deducting whether you should spend any more energy focusing on it if it’s not something you can change or fix.  There are so many factors in the world that are out of our control.

When I used to be taught to pray, I wondered what I should pray about.  I guess first for myself, then I would extend it to my family and friends.  Then I would think, what about everyone else in the world who isn’t getting prayed for?  So at the end of my prayer, I would just add “and everyone else who needs a prayer” to cover it all LOL.  But if one were really to meditate on just the incredible magnitude of people and beings in need at any given moment in time, it is reallyyy stress inducing.  I’ve felt so many times like everyone else’s life is moving on and people are living, but I am stuck in one dark place, ignored and forgotten.  Even if someone did reach out to me, it felt like a temporary relief, and then I’d go back to the same feeling of oppression and depression.  It’s such a terrible feeling of being stuck, that I wouldn’t wish it upon anyone else, yet realistically, I’m sure many of us have felt/feel that way, particularly considering how big the world is.

So just some amateur thoughts on what I do personally to relieve stress, here’s what I’ve picked up to try to help myself and my racing thoughts out.  Believe me, I’ve tried a lot of different methods.  (it sucks that I can’t say believe me without thinking of Trump -_-).

  1.  Do some light yoga, stretches, especially the neck, shoulder, and back before bedtime.
  2. Take hot baths and smell mint or lavender scents
  3. Drink chamomile or any other decaf tea
  4. Get a deep tissue massage
  5. Talk to a friend and rant or discuss feelings to get a fresh perspective
  6. Listen to music/read
  7. Treat yourself to something you like, such as your favorite drink
  8. Jot down things on your mind (like now haha)
  9. Extreme measures – Xanax or see an anxiety/sleep doctor

There are lots of things on my mind lately.  Not to the point where I feel like I completely can’t handle everything.  But close to the edge.  I worry about my future.  My parents future. That I won’t have them forever. That they might not have me forever.  That it’s one or the other. The world’s future.  If there is no God or greater being, is this all that we are?  Life would seem meaningless and humans are just another small spec in the vast spectrum of the universe.  Where am I headed? Am I doing enough? Am I doing too much?  I don’t want to lose faith in people, but I find myself more cynical than I want to be with each day.  I don’t want to grow weary and bitter of men.  I don’t want to go for something and feel disappointed yet again – in relationships, in believing in a better future, in being lost, in career, in personal goals.  Dealing with setbacks and not having the strength to carry on and face it all again. That choosing to give up would mean the ultimate seal of death.  Yet that death is inevitable even if I chose the opposite.  I worry that I will die alone.  I worry that I get trapped in an unhealthy marriage.  I worry that realistic marriage really is as painful as it looks.  That this is all there is to life.  That I stand out for the wrong reasons, that I’m different. But also that I’m forgettable.  I make no difference or impact in other’s lives.  But that doing good means nothing anyway in the grand scheme of things.  That we are not to be complacent, but we are also not to stay unsatisfied by yearning for the next best thing.  Yet we keep chasing something that is unreachable forever, but that is all progress works.  I’m sad for all the human life that is dying and suffering from lack of basic needs, sustenance, that all these children are born into endless agony and their life ends briefly- what is the point of this?  I want to be kind, but I don’t want to be naive, tricked, taken advantage of, but there is so much fucked up in this world.  So much bs.  Is this bs and fucked up shit necessary to sustain an imperfection that creates a balance of the ultimate imitation of perfection?  We know communism doesn’t exist.  So many concepts don’t exist because humans are greedy.  We want, we take, we want to grow, to expand, to reach the next personal achievement. We want acknowledgment, power, status.  We want validation, we want to be more beautiful, more wealthy, more successful, we want what others have.  And yet if we didn’t want, the global economy would crumble as we know it.  Without the ones who suffer as those who receive the short end of the stick in fate, we would not have ones to compare who drew the long stick.  Comparison and perspective.  If I did something good, what is that motivated by?  Wanting to feel better about ourselves?  To feel like a savior?  Maybe I should forgive myself, cut myself some slack.  But maybe I shouldn’t, and I am just as fucked up as the others around me.  But I just don’t see it because most people are blind and righteous.

It would be comforting to truly believe in and belong in a religion.  Yet all religions could have been manmade, the bible could have been manmade, because history is so prolonged that at this point, we have no clue what the truth is.  It is rewritten by those who have won.  Does this make us close-minded, to not examine ourselves and to not constantly question what the truth is?  If we are perhaps abusing or misinterpreting what we believe to be “truth”.  You could think you have it all figured out.  But you could be wrong.

 

Dating with a Chronic Illness

My mom has talked to me about what it’s like to live in another country where English is its primary language but not yours.  There are a lot of struggles that I can only imagine, as I am privileged to grow up understanding two different languages and two different cultures.  There are times where they clash, but it was overall still much easier to absorb for me than for her.  There comes the theme of caring less what other people think, and doing what’s best for yourself.  Even though the situations vary for all of us, the feelings are very similar.  Anxiety or worry about how others perceive us, how they judge us.

It frustrated me that it was frustrating for her, and that she could not seem to overcome those feelings.  More relevant, to become more self accepting of myself so that I have the courage to reach for things I want out of life. Particularly with the process of dating and fearing the reception and outcome.  It is really difficult.  But I really have to work on becoming okay with who I am, chronic illness included.  It doesn’t define me, but it definitely affects me in so many ways.

 

On the calmer days lately, you know when you’re having a good day or good phase of your life, you kind of think, wow, I remember having such a bad phase and feeling so frustrated and easily stressed by everything, including other people’s problems and the world, but it’s almost hard to imagine what it was like because I feel so chill and okay in this moment?

I’ve definitely been chiller lately, but today with some of the crashes and yelling, just like that brought back with ease a bunch of memories and buried tension and a taste of the major anxiety I’d tried to run away from forever.

It made me think, oh well, this is why that happened and why I felt that way for so long.  Like there wasn’t a light at the end of the tunnel.  No way out.

#Bummedstatus

I think it’ll eventually be better though.  It has to.  Focus, focus, focus.