Disney + Worries

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

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

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

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

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

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

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

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

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

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

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26 Random Facts About Me

  1.  I have an obsession with the color orange.  Others include burgundy, olive green, charcoal gray, and cobalt blue.
  2. My mom used to measure my height every single day in the morning, hoping I’d magically sprout an inch.
  3. Favorite movie series is The Godfather Trilogy because it depicts the conflicting morals and hypocrisy we often run into in life and other people.
  4. Cooking is much more preferable to baking because it is more flexible and liberating to adjust spice levels and ingredients to individual taste and mood.
  5. I was homeschooled full-time until 4th grade, and partially each year after.  My classmates always thought I was hibernating.
  6. Because of being out of school so frequently, I kept every single letter and card written to me since I can remember.
  7.  I spend almost all my free time with Spotify playing on the background.  I listen to music so much my turnover rate is extremely high and I’m always hunting for new music.
  8. I’ve performed at Carnegie Hall once and Lincoln Center twice, one of which was as part of a six-hands collaboration.  Stage anxiety and piano has taught me the true meaning of complete control and the true power of mind over matter to face your fears.
  9. Unwinding time usually involves watching a few mukbangs (food eating shows) on YouTube
  10. I like to pretend I’m on MasterChef or Chopped when I plate dishes.  As the main proprietor of non-Asian ingredients in a traditional Asian household, I introduced my parents to the concept of heavy cream.
  11. The only poetry that have ever made me feel anything are written by Rupi Kaur.  And Shel Silverstein.
  12. Warm over cold.  Always.  Proof can be seen in the heaps of scarves friends and family have gifted me over the years.
  13. Happiest moment of my life thus far was sitting on a gondola in the most beautiful city in the world:  Venice, Italy.
  14.  The only family tradition we have is having hot pot together during Chinese New Year.
  15. My best friend is also my childhood next door neighbor.  Growing up, we would often climb trees (we named our favorite Mabel) and call each other past midnight to lay on the lawn and watch meteor showers.
  16. I am always on the hunt for the best product of its type, such as best recipe, best version of a song, best clay mask- once I believe I’ve found it, I will defend it to the death and stay loyal to that product.
  17. I spend a lot of time thinking about the truth and reason behind everything.
  18.  I have a movie diary where I jot down every single film I’ve ever watched with a personal rating, as well as movies to watch.  The one time I got ear surgery and was bedridden for a week, I marathoned 42 movies.
  19. My favorite landmark of all time is the Colosseum, which represents one of the most fascinating parts of history at the peak of Roman power.  What makes it fascinating to me is the juxtaposition of civilized people with the cruelty and brutal entertainment offered by gladiatorial battles that took place in the stadium.
  20. Even though I was a music major, my closest friends in college were all international relations majors; I credit them for getting me interested in politics and cultural issues.
  21.   Struggling with insomnia, in the past year there were two occurrences where I was wide awake for four days straight.  I felt like time became irrelevant and I was a bit of a vampire.
  22. My last meal I would die happy with is Korean BBQ.
  23. There’s a meme that floats around saying they don’t trust anyone who puts in milk before the cereal. I do both because I like to vary it up, but I think I’m still a  pretty trustworthy person.
  24. The first time I felt like I’d really come alive was studying abroad in Taipei, Taiwan the summer of my senior year in college.  I explored, made friends, ate and absorbed a lot.  It was rough on my body, and I had to take so many breaks and learn to be open with strangers in order to explain my slow pace walking, but it was also one of the best decisions I ever made, because I was accepted by them without hesitation.  It was the first time I truly felt accepted, and that things would be okay if I learned to trust occasionally.
  25. I’ve lived the majority of my life on 19% lung function due to a viral infection I had as a toddler.
  26. There’s also a quote floating around that says “You’re either a Blessing or a Lesson,” and that is so applicable to the people we meet and the experiences we face.  I strive to be a blessing to the people I meet, but I am sure my imperfection causes me to be a lesson sometimes.  This quote also helps me to come to terms with “bad” people/experiences- nothing is in vain.

Acceptance in Mind, Heart, and Soul

I often find it difficult to understand how people have that kind of faith in God or a bigger picture.  I want to make sure I try to obtain that kind of peaceful acceptance in my heart, without stopping to fight for the way I want to live, my right to be who I want to be and who I am, and becoming complacent by giving it up to fate or that it’s “out of my hands” and “God’s will.”

I think the people in this world who are angry, hurt, and who struggle with depression and anxiety, see all the misery that is the world’s suffering, and we feel it more deeply, to a point where it is near unbearable levels.  That’s some of us fall prey to alcohol and drugs, anything at all to numb the pain, even if it ends in self destruction.

This week, I’ve started my four-day lung transplant evaluation tests at UPenn.  I’m 24 years old, and I’m somehow simultaneously used to but also feeling misplaced standing in the waiting room with the other 60+ year olds.  I was wheeled in a wheelchair for a 6 min walk test, and one of the technicians said to me, “You’re too young to be here.”  I just laugh it off and say it’s okay, I’m basically an old person.

I don’t fit in with peers in my age group.  I don’t know how to at least pretend I fit in, and chuckle lightheartedly at moments in life like just silly things with friends.  I might as well be socially the same as a hermit in the mountains, with a long beard in a dark stone cave.  I have to relearn it each time I try to really interact with civilization again.  I’m awkward.  No denying it haha.

Instead of wallowing and focusing on how pitiful I am in everything I’m going through/about to go through, I’m trying to focus on the positive: my inner strength, the inner strength of every journey and experience that’s made me who I am today.  My Asian heritage, I am an example of what immigrants go through, what it’s like to grow up and live in America.  My struggles and experiences as a woman, my eyes have opened up to the inequality and the things that are really not okay.   From how guys sometimes treat me, from the subtle to the obvious.  Being manipulated, getting hit on sexually, or finding out that a guy hooked up with your friend while pretending to go after you while you were ill.  All of that shit.  All of it.  #metoo.  I feel the weight of it all right now.  But I’m still standing here, because I’m empowered by the strength of the people around me.  We’re in this together, we’re fighters, and that’s what life is about too.

I have to find the strength to endure it all, and keep trying anyway, despite constant setbacks and constant misunderstandings and judgment by people who are blinded by their privilege.  I need to overcome my own judgment of me.  And I want them to want to be better versions of themselves, because I see the potential.  If I didn’t, I would have given up on myself a long time ago.

Conscious Healthy Eating

I think as a kid,  I always had major health eating issues, in that I couldn’t stomach much food.  I felt nauseous quite often, and my mom had many a fit and headache trying to get me to finish a plate of fried rice.

As I got older, I started experimenting with cooking and found out that being in control of the food you consume and want to consume is very empowering and satisfying.  Knowledge is power, and creating meals, a constant in anyone’s life, is all the more important.

Especially now that I am reaching my mid 20’s and my parents are getting older, they ask me to cook food that is healthy.  Of course, it has to be delicious as well for us to not have heavy wandering eyes towards the cookie aisle.  No doubt, fried foods or anything with a lot of butter or fat is an easy route to delicious bites, but what is more challenging is championing a good mix of spices to bring out the natural flavors in food, especially vegetables.

My dad always joked that “if it’s healthy, it doesn’t taste good”, and I want to make it a personal goal to do my research and make sure that I produce meals that are healthy but also tastes good.  I’ve had some hits and misses, but the hits just prove that it’s totally possible!  It doesn’t mean completely cutting out anything with butter or sugar, but adjusting the recipe so that it’s still tasty, but doesn’t sacrifice the health meter.

I’ve had success in creating a few of my own recipes as well!

One-Pan Roasted Salmon and Vegetables 

1 fillet of salmon

Vegetables- bell peppers, tomatoes, asparagus, kale, spinach

Coat all in olive oil (maybe 1 Tbsp)

Spices:  salt/pepper or soy sauce, cumin, paprika, chile powder, a little allspice

Honey

Hot chili flakes (optional)

Fresh vegetables finishing touches (optional)- cucumber, avocado

Finishing touches of lemon/lime juice.  If not available, use a Tbsp of rice vinegar instead with the olive oil.

15-20 minutes in mini oven around 350-375 degrees.


I’ve also started making Overnight Oatmeal.

1 banana, sliced (and or other fruits like berries)

5 generous spoonfuls of old fashioned oatmeal

1 cup milk, or a bit over ingredients

2 dollops greek yogurt

1 Tbsp flax seed / chia seed

1 tsp vanilla extract

a little honey or sugar (optional)


This is my new hit my parents love:  Asparagus with cherry tomatoes and eggs.  I also stir-fried spinach, swiss chard, and peppers in rice vinegar, soy sauce, and honey, and piled that in between the asparagus.  One of the eggs broke, but the sauce still tasted great with a little smoked paprika.  Have fun with it!

Next, I’m going to try Oatmeal Blueberry Yogurt Pancakes: 

https://www.ambitiouskitchen.com/2014/12/oatmeal-blueberry-yogurt-pancakes-gluten-free-high-protein/

as well as Oatmeal Dark Chocolate Pumpkin Cookies!!

PMS?

I just want to scream at everyone these days, man.  It’s not that I’m angry for no reason, just that I’m extra sensitive and my eyes are open to how many fucked up situations there are in the world these days and I want to yell and shake it out of the people who are fucking up.  As if that could work.  Could fix, as simple as that.  Wouldn’t that be nice?

Everyone pisses me off.  Everything.  Maybe the person I’m most mad at is myself.  I don’t feel fulfilled.  And I want to do better.  I need a paying job while I go through all this stressful shit.

AGHHHHHH.

A Break Up

While I don’t claim to be perfect, in fact far from it, (read this post on Empathy, which makes me feel the burden of the world in addition to my own..), I refuse to lower my standards and expectations of the people I surround myself with.  Ever hear the philosophy that you are judged and influenced by the people you’re friends with?  That’s true.  More than ever.  I want you to at the very least, want to change for the better.  The beauty of never being able to reach perfection is that there is always, always, room for improvement and growth.  Don’t get me wrong – I don’t expect to surround myself with  “perfect” people- I expect us to grow together.  But what does one do when you actually feel like your own growth is stunted by others?  And if one is too “forgiving” or too accepting of the status quo, too content, too stagnant, how does anyone know how much more potential they can reach?  I’m dissatisfied because others are too complacent with themselves.

Then comes the frustration, but also the acceptance that we can’t force people to change if they don’t want to, as I am constantly reminded this past year.

I feel a bit like a failure, because regarding myself, I’m not sure I added much happiness or growth to anyone else’s life that I met this year – did I make a difference, a positive impact in their lives?  I don’t know, but I hope so.  Sometimes, we don’t always get to see the fruits of our labor and the ripple effect of the ripple we dropped in the water.

But at the end of the day, I’m burnt out, I gave it my all, and I have no regrets.  It started out good, but now I don’t know what the point of my presence is here anymore… It’s time to let go and break up.  At least for the time being.

I’ll be alone.  But I’ve felt alone for awhile now anyway.

Wake Up Call: Steps to Motivation

  1.  What I realize is that it’s important to acknowledge what’s not okay, it is therapeutic to take a break and treat yoself, vent your frustrations (to the right people), and then-
  2. If possible, meditate and focus on what’s still solid and good in your life.  And finally-
  3. Also if possible, work on motivating yourself, and-*
  4. (If possible lol), work on improving yourself.

*The Step 3 is important because motivating yourself, whether that means forcing your ass out of bed, giving yourself a pep talk, finding someone else to encourage you, is definitely a step all on its own, but people tend to skip it.  Without Step 3, Step 4 is nearly twice as difficult.

In application to today, my frustrations:

  1.  That hospitals are as susceptible to fuck ups as any other organization or business, except it’s people’s health and lives at stake.  Today, I was almost given an arterial blood gas test when it wasn’t ordered for today- some problems with printing or administration reasons.  Good thing I made them double check.  All the more vital to be aware of your own shit.  Treat yoself:  I spent quality time with my friend, took a moment to be proud that even on a comparably grumpy day, I was productive, and then of course, bubble tea.
  2. The positive:  I have a select few great friends who are willing to help support me and my burdens in this tough journey.  Today, I vented my frustrations, and my friend listened patiently, but also helped guide me gently with her advice, which is always so precious and useful and calming to me.  Secondly, I came home to my mom telling me she got into a car accident, and after initial shock, for a few seconds I tuned out her voice, just being fully aware that she is still in one piece, in front of me, and that I still have a mother.  No one was injured.  Thank God.  I am lucky and still have so much to be grateful for.
  3. Dragging my ass to to Upenn again made me want to complain incessantly, but writing on here is my way of motivation and clearing my head.  I want to keep working with the mindset that if I were to die tomorrow, what is the legacy I have left behind?  Have I made a positive difference in anyone’s life, and have I contributed usefully to this earth while I was on it?
  4. The rest is obvious, in that my friend was proud of me that I have been slowly, but surely so diligent in achieving my goals of studying and eventually obtaining my Google Analytics Certificate.  This is one goal that I will not let go as it is totally doable and there is no excuse for me not to have it.  The rest is being able to forgive my friend, even if it takes a lot of time, something I was and am having a hard time being able to do, because there was a loss of trust and loyalty, and that is everything to me.

#chroniclesofthechronic

 

Am I Scared? Yeah.

The other day, I was talking to an evangelist and gave him a very brief update on my life.  I told him about my evaluations coming up and he asked me if I was scared.  HECK YEAH I’M SCARED.  But thinking about it and focusing on it and letting it paralyze me from my goals and living life isn’t the way to live.  So I try not to let it disrupt me too much.

But I had a dream last night, one of those dreams where you wake up in a dream and don’t really realize you’re in one (Inception lol), and I was in a cozy hospital bedroom, and as I moved, I realized I could breathe a lot better than I ever did.  However, as I moved, I realized that there was a deep wound under my right boob, and I realized I had gone under some sort of lung surgery.  Then I was in pain, or however close pain can be replicated in your mind in an alternate reality, and then it was not so fun.

When I actually woke up, I realized that this alternate reality is not so alternate, and then I’d have to prepare for twice the amount of pain as a double lung transplant would mean an incision under both my boobs.  This is fear.

Triggered Memories and Hope: Subzero Warm Mask (Solution for Lung Patients)

Triggered Memories

I’m having a coughing fit and my mom tossed a bag of HALLS Defense cough drops at me, the vitamin c assorted citrus kind… and suddenly I thought of a memory probably from 16 years ago when my 3rd grade homeschool teacher took one out and offered it to me in my dining room, where I’m sitting now.  I was too young to understand that my education was at the mercy of my homeschool teachers, and at their kindness and understanding. It makes me more determined to teach compassion to those who don’t innately have it, and I get the whole annoyance of being “too politically correct,” but I also think there are way more people who have the sensitivity of a rock.


Hope

I was web surfing and thinking, what can I do to help my medical situation now?  To tailor my situation to help improve my quality of life, instead of moping on what’s happened and what will?  I’m thinking of investing in a Modobag, the travel suitcase that you can sit on and glide through airports for so I can save energy and make things a bit easier on my body.   I also came across a subzero warm mask yesterday, and if it’s as great as the comments say it is for people with lung problems, then I will be super grateful.  It would be life changing and help me so much in being able to navigate the winter and the cold and allow me to go out and spend time with people and do my job and so many opportunities that feel robbed from me.