Disney + Worries

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

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

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

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

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

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

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

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

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

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

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Acceptance in Mind, Heart, and Soul

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

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

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

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

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

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

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.

Accessibility and Judgment at Broadway

Today, I want to talk about one of the reoccurring experiences I still struggle with accepting and going through, and that is first of all, how the lack of accessibility and modification of transportation in NYC is a huge detriment to many people who need it to get around and get opportunities.  Second of all, being strong enough to withstand judgment from others, whether friends or strangers, on your invisible needs, and probably getting judged for it.

One thing I constantly have to be conscious of is how quickly I use up my spoons for the day.   I modified some of my plans to tailor it to my needs, such as taking the train station in that is direct into the city.  Second of all, I decided in the cause of preserving my energy, I used the elevator once I got into Penn Station.  Third of all, even though I ran into a minor bump by trying to order a Lyft, and then ending up taking a taxi, I met up with my friends and got my taco as well.  The broadway show Cats was a little weird since I felt there was no plot, but nevertheless I enjoyed the experience.

I was a bit tired, but during intermission went to seek out the handicap bathroom in which I found myself in a line of mostly elderly people with bad hips and canes.  I knew I looked like I didn’t belong there, but I also knew in my mind and heart that I deserved to be there and it was my right to use that bathroom.  What wore me down a little was a few ushers swinging by, looking right at me and speaking mostly directly to me that they “highly encourage those who are capable of taking the stairs to do so with the one downstairs”… after the second time, I got a bit defensive and exhausted, and told them there was a reason why I was using that bathroom in particular.

It was also annoying that the old lady in front of me invited another older man to cut in front to use the bathroom…  I let him do so, but I wasn’t sure if it was out of kindness or guilt that I didn’t belong there.

Later on, we quickly racked up prices in using Uber to get around to the udon restaurant… It sucks that this is an extra price to pay as someone who has disability conditions, much like a woman having to pay for tampons and other needs just because she’s born with a vagina and menstruation cramps.

The world isn’t fair, and we have to try to find the courage to speak up for ourselves and for others.  Acceptance is key, and I’m on my way there before I can embrace it and fight for the rights that we are entitled to.

Fears

My deepest fears?

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

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

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

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

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

What I Learned in Taiwan

That year had been particularly rough on me, and I remember being on a bus in a desperate attempt to swig away my sorrows at TCNJ Senior Night, texting on a whim confirmation to my parents to sign me up for school in Taipei.  I was and am always hesitant and doubtful of new and scary experiences, but my grief momentarily blinded me from worrying, and it ended up being one of the best. decisions. ever.  Not knowing what to expect, my mom and I hopped on a plane in late May, and our first days of exploring the campus of National Taiwan Normal University excited me endlessly.  My mom finally coped enough to leave me to my independence after two or three weeks, and that week and a half was the funnest ever.  Sure, there were moments where I was so exhausted I was just barely able to move to buy myself dinner, and sure, the dorm’s strict curfew of 11:30pm was annoying, but for the most part, I was content to be able to manage my life without feeling so restricted.  Among the highlights of my trip were:

    1. Visiting my moms’ old friend’s village, which felt like a town in a Miyazaki film.  Her sweet and kindhearted family can COOK.
    2. Meeting up with my TCNJ friend Lauren at Danshui and having the MOST MAGICAL BUBBLE TEA at a cute cafe
    3. Going to Beitou Hot Springs and trying to compete against stolid old people by sitting in boiling water on a 90+ degree summer day- guess whose fingers were prunier?? Yeah, we didn’t win.
    4. Typhoon night where I huddled in my dorm with two yams from 7-Eleven
    5. Attending a 12 Cellos concert, courtesy of my aunt (phenomenal performance) in Kaohsiung
    6. Meeting new people, eating and bonding on mini-trips

During these mini travels, after months of therapy was I able to muster the courage to communicate my needs to new friends.  I tried to mask my shaky confidence as I explained what I needed: their understanding in walking slowly with me because it was hard for me.  I still remember the fear I felt bringing it up to my friend Nio as I walked with him and another guy through the streets, realizing if I didn’t say something soon I wouldn’t be able to keep up, and I was tired.  Surprisingly, without blinking or giving me any side look of pity, Nio said “Sure,” slowed down and casually asked me what my condition was.  A heavy weight lifted from my shoulders, and I felt acceptance.  What I learned was that as inconvenient as conditions like mine were and as rare as awesome people are to find, they exist. And sometimes you have to forgive yourself and distinguish yourself from your chronic conditions, and take a leap of faith in opening up.  Recognize that sometimes, you are not the problem.