Happy Fourth of July, 2019! *** (<- fireworks)

Today was a really good day, from beginning to end.  It’s been a pretty long time since I’ve had a solid good day where I wasn’t constantly sleep-deprived or worried or just somewhat restless and anticipating the next bad thing.  I just lived in the moment, and it was awesome to forget all the things I’d been thinking about nonstop. And it’s so nice to hang with somebody where it’s just effortless and fun, even when doing boring things.  Aka, my best friend.

First, we watched Avatar with our other friend online for about 1.5 hours, a solid few great episodes ending Season 1.  Then got ready to go out for a bubble tea and grocery shopping trip.  I’ve been trying to push myself more, and find active reasons to go out and move around more and exercise.  So I grabbed my portable oxygen, and we went to the new bubble tea place to try it out.  This was my second trip, and I wasn’t impressed with their salted cheese drink… it was just ok, just not something I’d crave in the future.  And also more expensive than I cared for.  Then we impulse-decided to go to Sunmerry and satisfy our craving for the best salted cheese green tea, only amplified by the mediocre salted cheese drink we just imbibed.  With that first sip, the world was right again.  Then we drove to Hmart to grab dinner, of which as we were standing there pondering, the sushi became 50% off, what a win.  Then we went hunting for her ingredients, and I also found an ube extract that I can use for future ice cream flavors and for cake!  So excited to try new things- I’ve got the Philadelphia Teaberry flavor extract “saved for later” list on my Amazon account- that’s next!  (I’ll also be receiving my cruelty-free bareminerals make up and metal cookie/ice cream scoopers soon!  That will make my life easier.)

Grocery shopping took a pretty long time, and I could feel my energy waning and burning up.  Finally, we sat down for a bit and then ran into a slight bit of traffic on the way home, due to all the pedestrians and police officers piling around the streets, hoping to catch some firework sights.  Then, after some rest, we set off fireworks on my driveway, which was a pleasant end to a pleasant day with good company ^_^

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FOOOOD. May 4th, 2019: almost officially listed: Updated

I’ve been trying my best to keep busy, with emphasis on activities that really require my focus and wholeheartedly occupy my time.  The main activities have been alternating between cooking, baking or making ice cream, and playing Mario Kart.  I’ve also been somewhat obsessed with tiny house videos on Youtube.   However, my parents are now marathoning Game of Thrones, partly due to peer pressure and curiosity from hearing about it, and partly because my brother managed to get my mom hooked last weekend when she visited him.  Even though she doesn’t approve of the gore and the nudity, the story is just too good to ignore.  So now we are binge-watching when we can, and it’s nice to be invested in something together.  My parents are also amping up on gardening, and full out mulching, buying plants, a gate for the deck, and decorating the backyard.  I guess it’s our way of dealing with all that’s happening and trying to continue living life as well as we can.  I’ve always had to see the doctor about once a week for vaccine updates (hepatitis b, ugh, 6 doses total), and for my weird hives allergy.

Otherwise, I’ve also been reading up on books I’ve saved on my list for awhile now, especially regarding Pulitzer Prize, or New York Times bestsellers.  I don’t know why, but my curiosity with learning more about the Holocaust has now expanded to other war-related topics, such as Iris Chang’s book regarding the Nanjing Massacre and Chinese history in America, and currently I’m reading “Gulag: A History“, which I had no idea was about Russian concentration camps, but it’s weirdly interesting, although appalling to realize this is real history that happened to people.  How can so much suffering exist?  It’s almost like what’s the point of living a life of constant starvation, imprisonment, and fear?

Back to baking and ice cream making, which are the newest and least experienced activity I’ve taken up.  On the plus side, we have fresh desserts all the time now since I make it a point to attempt one recipe per day, or every other day (cooking counts too though).

I’ve made korean cold somen noodles with the sauce and cucumber and eggs, SO GOOD, my fav new dish to eat for the summer.

Baking:

  1.  Matcha Mochiko Cake:  3.8/5, 3.2/5
  2. Matcha mochi with red bean:  3.5/5
  3. Pound cake muffins:  3/5
  4. Sugar cookies:  4.5/5
  5. Golden raisin oatmeal cookies:  4/5
    • criticism:  not bad, not particularly exciting either
  6. Carrot cake with cream cheese frosting:  4.5/5  (2x)  
  7. Japanese cheesecake:  3.7/5
  8. Dark chocolate brownies:  3.5/5
  9. Castella cake (Japanese honey cake):  4.3/5  (2x)
    • https://www.justonecookbook.com/castella/
    • criticism:  slightly dry.  brown sugar visuals isn’t as clean as white sugar
    • made twice, second time used white sugar, and also it took 50 minutes, not 35 minutes for my oven.  Leave oven ajar for about 5 minutes.
  10. Jenn’s chocolate chip cookies:  4.6/5
    • criticism:  inconsistency in choco chips, and too few. a couple slightly overbaked
  11. Chocolate Crinkles II:   2.8/5
  12. Japanese cheesecake again:  3.9/5
    • used springform pan this time, better.
    • criticism:  didn’t rise as much as expected, fluffier than first time, but still not fluffy enough- oven temps are possibly too low, and/or took too much time to set up parchment and pan after whipped egg whites.  sides were overgreased, a bit oily/soggy, and flipping it, it fell apart, but overall success.  Would not do 300-250 degrees again.  Try 320-285 degrees instead.
  13. Sopapilla (Mexican cheesecake pie): 3.5/5
  14. Jjinppang (Korean red bean steamed buns): 4/5
    • https://www.maangchi.com/recipe/jjinppang
    • criticism:  didn’t wait 30 min for buns to rise and become fluffier before steaming, did not close buns successfully, flour slightly got dry
    • very ugly but delicious
  15. Scones + Lemon Curd:  4/5, 4.5/5 
  16. Japanese purin custard:  3/5
    • House brand – Instant mix, uses gelatin, which I don’t eat anymore (animal parts)
    • Just doesn’t look that appetizing, yields 3 mini portions; parents liked it though
  17. Chocolate chip cookies: 2/5 
  18. Pumpkin Bread:  3.9/4
  19. Quiche with Sweet Onion + Sharp Cheddar Cheese:  4/5
  20.   Tres Leche:  4/5
  21.   Cheesecake (Cheesecake Factory recipe):  3.9/5
  22. Pinwheel cake:
  23. Almond Jelly:
    • using agar agar

Ice Cream:

  1.  Vanilla ice cream with dark choco chips :  A-
  2. Matcha ice cream :  C+ 
    • 3 eggs recipe
    • fatty, with 1 cup milk, 2 cup heavy cream
    • criticism:  failed to temper eggs properly, ruined texture.  overhardened from churning inconsistency, and too much matcha (3 tbs).  Also should not use egg whites
  3. Mocha ice cream with dark choco chips:   A-
    • 3 egg YOLKS
    • fatty, very rich, custard-like, creamy with 1 cup milk, 2 cups heavy cream
    • criticism:  not enough chocolate flavor, personally too creamy for me, also didn’t like dark chocolate I used
  4.  Strawberry ice cream:  A-/A
    • eggless recipe
    • lowfat, with 2 cup milk, 1 cup heavy cream
    • delicious fresh strawberry flavor!  half pureed, half diced
    • criticism:  not creamy consistency enough, slightly icy
  5.  Godiva dark chocolate ice cream:  A                                    
    • 6 egg yolks
    • very rich and creamy
    • added cheesecake and toasted almonds
    • criticism:  slightly too heavy for me
  6. Badam ice cream:  A
    • eggless
    • 2:1 heavy cream ratio, less icy!
    • added brownies
  7. Coffee milk tea ice cream:  B-
  8. Mint chocolate chip ice cream:  B
    • eggless
    • mint extract + vanilla extract
    • criticism:  a bit too sweet (1 cup sugar, less than 4 cups ratio… error)
  9.   Red bean ice cream:  A+ 
  10. Watermelon Sherbet:  B+ 
  11. Vanilla Ice cream II :  B-
  12. Cookie dough Ice cream Sandwiches:  C+
  13. Mango Sorbet:  A-
  14. Ube Ice cream:  A
    • used 1 cup milk, 1 cup heavy cream, 1 tbsp ube extract, about 5 oz. sweet condensed milk ( I eyeballed it)
    • first batch was burned with coconut milk, dumped 😦
    • deliciousss, even though the ube is imitation and a really small bottle
  15. Upcoming ice creams:

Other:

  1.  Shakshuka:
  2. Spiced Naan

P.S.  I hate how insurance companies and random coordinators from hospitals call me up whenever, so it’s like I have to work extra hard to stay distracted and occupied with other things.  They could call me at 8am, 10am, 2:30pm, 5:00pm, really now.  And not that I’m exactly “busy busy” but I’m sometimes in the middle of sleeping, or washing dishes, making dinner, or in the bathroom, and I just have to drop everything and set aside 15 minutes or however long to discuss things.  I should be officially listed Monday.  A part of me thinks I’m insane for willingly sending myself in for this kind of surgery, the other part of me can’t wait.

4 Weeks Pre-Transplant Official “Yes” Mindspace

I am so bored… my mood was alright until the past few days.  Maybe it was because of my last therapy session where we talked about death, and a part of me just felt kinda bummed.  What if I die?  That’s just the end… and I really wish I could do so much more before my time is up.  I’m also so sad at the thought of leaving my family.  But these thoughts aren’t very helpful since they’re out of my hands.  It also could be that everything goes well and all this worrying was for nothing. Despite my hanging on to the success stories, there are so many people, young people my age who have passed away either through an unsuccessful surgery or after a year or two.

How to stay motivated and productive? IDK. I am actually tired of Mario Kart now since I play religiously for a couple hours everyday, and I am also getting road rage at Waluigi and other characters.  I’ve started trying some cooking recipes this week, but none of them made me that happy because it wasn’t super successful or delicious.  I have this weird thing lately where I keep trying to fill a void by trying new things and getting really excited, but then being like “oh that was just ok” after.  For example, the recipes, and ordering a bunch of korean instant noodles, and now looking at clothes and I want to buy everything, but I know I don’t NEED some of these items.

I have dealt with a few minor insurance things this week, and then wondering what to get my brother for his birthday.  It’s tough!  Hard to know what he would actually like or find useful.    I also finally measured my body parts so I know exactly what kind of clothes would fit me well.  I also contacted a couple apartments in Philly to get some information on the places we could stay at post-transplant recovery.

I’ve been continuously working on lessening my impact on the environment.  Steps I’ve taken the past year and recently:

  1.  Dropps – eco-friendly laundry detergent.  I can’t really tell the difference in the usage of it, but I only bought a sample pack so far.  It comes shipped in a brown cardboard box and dissolvable plastic.
  2. Hydroflasks + Swell – Reusable, High Quality Water Bottles for my family and me.  No more plastic bottles unless emergency use
  3. Reusable Grocery Bags – we got some wegman bags, but 50% of the time we forget to bring them or use them when we go grocery shopping.  Still in progress.
  4. Metal + Bamboo Straws – either reusing plastic straws that we have at home, refusing plastic when we go out to eat, and buying reusable straws instead
  5. Everlane clothes that are eco-friendly and also ethical.

Now my internet knows I’m interested in these types of things and I keep getting ads, which I don’t entirely mind.

It’s now Friday late at night, and I feel a bit better (I started this post at the beginning of the day).  Tomorrow my dad and I are going to bake and maybe go grocery shopping for a little bit.  In a sense, my dad is my best friend and the most comfortable person to be around, and he always does things for me with endless patience and tolerates my tempers.  In regards to the therapy session about death, I have decided to buy each of my family members and maybe friends a special gift, one that they will always associate with me.  It doesn’t have to be anything extremely unique or fancy, but something we had talked about or whatever.  I have decided to buy my mom a pair of earrings, because we have talked about it forever, and I want the design to be special from her other earrings, so I looked on Etsy.  I don’t know what to do about everyone else yet, but I have time.

Claire Wineland died at 21 years old after a lung transplant.  But she is my hugest inspiration and role model, because she achieved more and looked on life in a positive perspective that most people who have lived far longer will never manage or appreciate.  Time is truly short, and with that, she always enjoyed her time with her family and friends, did what she loved, started a foundation, gave uplifting speeches, and became an adviser for a movie (“Five Feet Apart”).  Like, damn girl.  And she managed to stay beautiful in every possible way.

While I’ve gone through a bum wave, I am now thinking again about what it would be like to walk more than a couple minutes and not be exhausted, to spend time hanging out with a group of friends and not have to recover the next day, to be able to explore and travel, in the cold and in the heat, walk up a slight incline or stairs and not be out of breath, holy fuck, I think the truth is everyone else is living the life of a superhero, but most people are oblivious to the miracle that they are and all that untapped potential.  The body and mind is made up of a million mini functions and organs that work together to keep you alive every second of every day.  To have zero issues in any of those departments is indeed, a walking miracle and the ultimate blessing.

What life has thrown at me, most of us will experience eventually, just I am going through it earlier and more intensely.  When faced with greater pressure and intensity, one can also manipulate the sour lemons into greater perseverance and make something bigger out of it.  I’m not sure exactly what that is yet, but I want to discover it.  Most of us are more alike than we realize; we can feel self-conscious, worry about what others think, and that can manifest itself in anything from using a wheelchair to having a pimple.  I guess in that sense, it calms me down to know that I am not that different after all, and definitely not that alone.

 

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.

Birthday Blessings

I am officially 26! … I have graduated from the bracket of age 18-24, occasionally 18-25.  Apparently I’m not truly “old” or in my “late 20s” until I’m 27.

I feel really lucky to have wonderful family and friends to make me feel loved.  Even though one could argue that my quality of life has gotten worse, that is only physically.  Mentally, I’ve become stronger, not without the help of therapy.  My perspective on life has changed, and I’ve grown more hopeful and better enough to fight for a future that could improve my possibilities of things I could experience, a life that I had only imagined since I’d grown up.  I’d be able to run, hang out with friends an entire day without feeling exhausted, I’d never feel short of breath again from walking a couple blocks or walking up stairs, and I’d never have to feel that dizzy, wobbly, bursted feeling whenever I did try to push that boundary.

I was pretty satisfied with a casual hangout with my college friends last weekend, and determined to enjoy the present for all the happiness it offered.  I kept getting expected and unexpected love, which included 3 delicious cakes, two books, a Nintendo Switch, a Nordstrom gift card, a heated blanket, balloons, flowers, and a lovely Cajun style seafood dinner with family.

My heart is full, and all these memories just remind me not to take anything for granted, and to keep trying my best for an optimal future with the people who matter most.

P.S. Got another last minute visit from my friend and her baby today (Tuesday)!  He is growing up so fast, this is my first time seeing a baby every couple months, and it’s crazy to me how quickly he picks up things and how beautiful of a child he is.  I also have firsthand appreciation of a mother’s full-time work in looking after another human being.  They gave me an orchid plant and another birthday balloon!  Whoo-hoo.  For reals, most of my life I was bitter and resentful of anyone who I thought was a friend but ended up not being there for me.  It may be because of my change in perspective, but all I feel is joy in mattering in other people’s lives, and that I have friends who offer to drive me to UPenn at all touches me.  We don’t know if we have another minute, day, week, years, or a lifetime to spend with our loved ones.  I’d always been on a rush to live as fully as possible whenever my body allowed me, and it only makes me more determined to live longer and healthier because now I have fully understood the meaning of life and my place on this earth, and I will not take it for granted if I had a second chance.

Giving and Receiving Gifts

When you don’t know someone, it’s really hard to buy a good gift for them.  Usually, if I don’t know what to get someone, I’d rather not waste their space or my money, but if I know for a fact, or at least over 50% chance they’ll use it or like it somehow, I feel much more satisfied splurging a little.   I have no problem either with people giving me really nice or expensive gifts alternating years instead of 2-4 cheap, useless items, so that’s my philosophy on gift giving and receiving.

There’s a lot in my life that I don’t feel great about, but I do feel blessed about the wonderful and amazing gifts I’ve gotten from people, with some of them just 100% great, squeezing that usage out of every bit of that tall price.  Sometimes, they’re gifts to myself xD  But one of the most annoying feelings is splurging on something, and realizing it’s only half effective, or it breaks right away.

Sometimes they’re perfect gifts because of how useful they are, but other times they’re perfect because it’s tailor made to that individual’s needs or wants or style.

Some of the stuff I’ve gotten or given that has been A+ satisfactory and #worthit is:

Daniel Wellington watch (broken by my dog though)

Amazon Kindle (haven’t used it much recently though)

Nintendo Switch 

MacAir 

Samsung Galaxy S7 phone

Bose headphones (both times, first one lasted me 5-6 years with daily usage)

“Becoming” by Michelle Obama (usually hate keeping books, but I want to keep this one)

S’well / Hydroflask water bottles 

Helly Hansen base layer jogging shirt 

Earrings (really beautiful pair was for mother from my dad and me, looks perfect on her)

Soma Intimate bras 

Nordstrom tops/dresses 

Taiwan glasses

RavPower phone chargers

Of course, there have been many a regrettable buy as well… the time I spent $80 to add on a dvd player to my macair, and it broke within 2 years… the time I ordered a $50 dress and it was too big and I couldn’t return it… all the random jewelry I got over the years that I don’t really like but keep anyway…

It’s easy to overlook all the nice things I’ve had or given over the span of 26 years, but this is my list, and I do feel lucky looking at the nicest things I’ve ever got to own!  🙂

PS 1. And of course, not to mention, my parents try their best to support my incredibly expensive healthcare needs, which is probably the best gift I could get.  Spending money to rent portable oxygen on flights, to book a cleaner, newer hotel, my daily medications, my oxygen tank at home now, and all random other crap like a heater, humidifier, air filter, nebulizer, doctor appointments, = $$$$$.  @_@ Insurance is definitely something everybody needs, no matter what.  You don’t want to get stuck with a $60,000 hospital stay with no one negotiating the cost down for you.  sigh.

PS 2. Since this post is a bit about consumerism, besides buying reusable metal straws and using refillable water bottles, I also want to start buying from sustainable, ethically sourced clothes brands.  Also,  Quality over Quantity!!

 

To-Do Now / Bucket List Post Transplant

BUCKET LIST POST TRANSPLANT

  • Skydiving (maybe, we’ll see what the doctors say)
  • Play with a baby elephant
  • Dance classes
  • Make a vocal cover
  • Travel as much as possible – one trip with friends, as many with family as possible (see future blog post on destinations, particularly landmarks)
  • live in NYC for 1+ month
  • Check out Wicked on Broadway
  • Go hiking, just cause I can
  • Taekwondo (maybe)
  • Get a high paying job – buy my parents a really nice present (trip abroad?? Celine Dion concert??)

TO-DO NOW

  • Continue learning Korean
  • Watch Hasan Minhaj Netflix special, learn more about Saudi Arabia women’s rights
  • Continue UN online volunteering
  • Learn more SQL / data science things / Tableau
  • Read up on 2020 presidential candidates
  • Do some basic leg exercises
  • Try to gain some weight
  • … other useless things I should not to-do… like The Bachelor (darn you, Erin!), mukbangs, and Toon Blast

Lung Questions and Stresses

  1. Since my diagnosis is obliterans bronchiolitis, with a lung transplant, technically should be cured?
  2. Would the lung function immediately be high, or would it be low and slowly improve over time?
  3. Two incisions under boob (video assisted thoracic surgery?  or one across?  Dr. Cantu had mentioned two incisions which heals faster)
  4. How would we know when we can go off the ventilator?
  5. Are we very conscious the days following surgery?
  6. Chest tubes I heard are painful ?
  7. Dr. lee mentioned some improvements made since the time I got evaluated 2 years ago- can you give me some more info on that?
  8. Support group —> particularly for parents; and info session link.
  9. How would the cold affect my new lungs?  i know sick people are risky, how would that compare to cold weather?
  10. Dr. lee would present to case, then would i be activated on the list?
  11. When we get the call for a lung transplant, do we get to know what the age is of the donor, besides high-risk factors?  What are the determinations for a qualified donor lung?
  12. What is the opinion of the lung transplant’s team ?
  13. Can I go skydiving?

215 662 6200, press 3 for lung team

Emergency call 215 662 4000, ask to be connected to provider on call.


I think because I’ve had therapy for 4 years, I’ve gone through the 5 stages of grief.  Obviously, I’m not “ok”, but I’m okay enough to understand and accept that this is what I have to go through eventually if I want to live.

My mom on the other hand, is definitely going through all stages of grief.  I think even though doctors have told her in the past, she was always in denial and firmly kept believing that there were other things she could do to maintain me where I was.  Like giving me chinese medicine, having me avoid certain foods, and being upset at my dad because he didn’t move us to a warmer climate (California).  While it may be true that that that could’ve helped, or prolonged my diagnosis, it is also true that that would not have been a cure at all.  Functioning at 19% was a miracle for the time that I’ve grown up, but I had never known otherwise.

I’m really worried about my mom and how my parents will handle this, particularly if it goes south.  She kept having a meltdown and saying that there’s no point in living without me, that her meaning in life was for her kids and her family.  It is really burdensome for me to hear this, and part of what is making me uneasy and hesitant to tell the lung transplant team that I’d like to move forward.  Her stress is understandable, but it definitely is bouncing the stress over and over between us.  I want her to separate our lives a bit, because like Michelle Obama said, you are only responsible for your own happiness.   My acceptance and peace that it could all end up okay was faltering, and I ended up having a terrible nightmare of me being chopped into pieces like ham, and being sewn together with body parts of another person.  I saw blood on the bedsheets and all that, it was pretty horrifying.

I also had doubts that I’d have the strength and determination to swallow all those pills daily for the rest of my life.  But of course, when I thought of the bad things, I forgot about the good things, and vice versa.  I was trading in my life now, for a new life where yes, I’d have different risks and complications, but I could be able to breathe and run and dance and travel.  I think I would feel superhuman at that point.

Also, the cabin fever is really wearing me down.  Every winter, I feel like I’ve lost my mind, and wonder how I was able to make it through each year. Quite honestly, the quality of life imo is appalling.

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.

 

 

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.