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.

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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.

 

Storytime: That Time I Got Robbed and Other Musings on Gratitude and Empathy

~StoryTime~

There was this one time when my parents and I were on vacation in Canada and my mom and I had gotten into a fight the previous night; I was about maybe twelve years old.   The next morning, we ate at the hotel complimentary breakfast with the expected aftermath of awkwardness in the air- I kept my eyes lowered to shield my puffy red eyes under my hat.  There weren’t many other people around, but I remember seeing two tanned men sitting near us at the next table.  I was in a foul mood, angry with the world and still upset at something my mom had said earlier; my feeling ashamed reflected clearly in my flushed face.

I was so lost in my own world of sulky thoughts that I only barely took notice that my mom had left the table to get more food.  Soon after, my dad also got up to head to an aisle leading to the men’s room, leaving me alone.  The next minute, I was whipped out of my thoughts by a man who approached me, pointing furiously towards the direction my dad had left in and jabbering in a foreign language.  His panic was infectious.  The first thing that came to my mind was that something had happened to my dad: he had a heart attack, he had passed out, there was a fire.  I hesitated and stood up as the man bolted off – confused, I wondered if I should follow him or call the police.

Next thing was my mom’s alarmed voice; she had come back and immediately exclaimed, “Where’s my bag?!”

I glanced around to the chairs around me, and only saw mine.  That was the moment  I realized that I had been hoodwinked.  The men who were sitting near us were gone.  The police arrived and questioned us, and after watching the security footage, confirmed that the two men had dashed out the backdoor.  The police told us that it was one of a few cases that had happened recently in the neighborhood hotels in the same exact fashion.  The next hour was filled with my mom calling various places to cancel her credit card accounts, phone accounts, and anything else the police advised her to do.  My mom’s camera, phone, and unfortunately, more than half a thousand dollars cash had been in her favorite bag.  She said she had forgotten to remove all the cash since her recent trip to Taiwan where she wanted to exchange some of it for Taiwanese money.

The shock that had hit all of us that early afternoon had us immediately forget, or rather, let go of any ill feelings harbored towards each other.  I remember feeling a mixture of emotions.  I felt guilty that I had not watched our things more carefully, that I had so naively been fooled by that guy, who must’ve distracted me to one side so that his accomplice could grab my mom’s bag to the other side of me.  I felt a bit regretful that so much money had been lost, especially since my younger parents worked hard to save up money.

I also felt tremendous relief that nothing in fact, had happened to my dad; he was okay.  My mom was okay, I was okay, we were all okay.  Nobody had held me at gunpoint or knifepoint threatening to kill us if we hadn’t handed over our possessions.

I also felt the weight of grudges just a couple hours ago melt into incredible gratitude, realizing by comparison the full pettiness of my sulky world.  One argument was a bad grain of sand in the spectrum of our lives.  Even though I don’t count myself as particularly religious, I remembered thinking that this incident must have been God’s reminder to me to wake up and understand that much worse things could happen at any given time.

We really tend to see what we don’t have, and what others do have.  Even on days where I’m in tremendous pain physically or emotionally, or my car broke down,  I would just think, if only I didn’t have to deal with this shit.  How much better the day would be if I just wasn’t in pain, if the car just worked and I could get to my friend or my groceries.  That’s how we see that the ordinary, “boring” events are actually extraordinary.

Today, some tragedy could’ve happened that left my family homeless.  Today, I could be so destitute that I don’t have enough money to buy dinner.  Today, I could’ve lost a loved one.  Today, I could’ve found out someone I loved didn’t love me back anymore.  Today, I could be feeling so depressed that I want to kill myself.  Today, I could be lying in the hospital again, just wishing that I could sleep in my own bed and get a hot shower.

Today, none of those things happened, and I did get to feed myself, sleep in my own bed, and take a hot shower.

I was in the car the other day and musing over the whole “glass half full, glass half empty” cliche.  Maybe we’re missing the point when we look at it that way.  Maybe the truth to finding Zen and acceptance of everything around us, including the shitty parts, is to see the glass itself.  That the glass exists at all.  That we have a glass.  That we have water at all.  It could all so easily be nothing, just empty space floating into more nothingness.


-Just a passing thought about how to find happiness and peace since that is something I’ve struggled with my whole life.

Reminder though, that even though we should strive to be more appreciative and notice all that we do have, it’s still okay to let yourself feel the sad parts too.  We’re wrapped up in a society that expects us to feel fine all the time or try to get us there (“Feel better!” “You’ll be okay” “I’m sorry” other crap etc.).  Is that true healing?  No.  You have to walk through the tunnel to get to the other side, there is no shortcut.  You can’t magically Apparate or sprout wings over the tunnel.  What we can do for each other?  For true empathy, be there for one another.  Rather than a “Feel better”, I want to live in a society where we hold each other’s hand.  We offer an embrace, we tell them yes, what they’re going through sucks, but I’m here for you.  I will walk with you through the tunnel.  You’re not alone.

There’s a difference between finding pleasure in sulking in misery, and brushing off any pain like it’s nothing.  Validation, entitlement, to your feelings… I guess it’s a bit of a fine line sometimes depending on perspective.  There’s a balance.

I’ll admit that this is one of my faults too.  I’m a hypocrite, because I have told people to “feel better” before.  Because when I feel their burden, I just can’t.  I can’t even handle my own burdens sometimes.  “Put the oxygen mask over yourself before helping others put their masks on” <— wise words of a flight attendant.  But I’m working on it, and I wish more people would just give more of a shit to be honest.


Today’s Obsessions (Music):

-Heaven by Julia Michaels

-Sacrifice  by Black Atlas & Jessie Reyez

-Wait by Maroon 5

What Animal Would You Pick If You Could Become One?

In 6th grade when we had to introduce ourselves including our favorite color, number, and animal, we would have to explain the animal we would transform into if we could.  I always picked dog or butterfly or eagle… the one I picked the most was the dog because well, a dog is always loved by everyone, and you don’t have to do much except be fed and cuddle right?

As I’m older though, I think it’s a horrible idea.  First of all, it really depends on what country you’re born in.. if you’re born in a country where they still consume dogs, then you’re pretty much fucked.  Second of all, once in awhile I would picture what it’s like to have a bunch of wide-eyed excited giggling humans touching me without my permission, and forcing me to roll over and do stupid shit like that.  I would be bewildered first of all because of my social anxiety, and then I couldn’t even bark or bite them or I would be deemed “unfriendly”, a nature that is contradictory and unloving to what dogs are supposed to be to humans.  But humans suck and in some ways, they are really condescending sometimes!  I truly believe dogs are angels sent from above, we don’t deserve them :/

It’s kind of like stereotyping dogs and women and third world countries, where you help them out, but they were always remain second to you as a “pet” and you as the “owner.”  So even if you didn’t physically abuse your pet, probably one of the perks is having that power to control this cute and vulnerable being.  Not to mention if they dared cause any sort of injury to a human, they would probably be put down :/  Even though humans exercise the right to harm animals, even if institutionally in farms or wherever most of the time.  Can you imagine how much life would suck for humans if another species more clever than us dominated the planet and they were as crappy as humans?  I wonder how many mean psychos and compassionate people exist in this world, and whether they equal each other out.  You always see it in politics.  In most of the minds of people though, they always right and the good guy.  The people who can’t accept same-sex marriage because they are stubbornly fighting for a tradition that is the correct way to live, so depending on where you stand, you are either a jerk or an altruistic individual.

Anddd this is why they ask a child at age 12 this kind of question, because as an adult you way overanalyze and overthink your answer to the point of exhaustion.

A butterfly also dies in 2 weeks- am I okay with the transcendental brief life span?  I guess depending on humans too living an average of 80 years or whatever, it’s all subjective.

As for an eagle, well they can fly and they are definitely powerful.  Bald eagles are also revered in America.  But Idk.  They look like assholes.  LOL.  I’m judging now based on looks, which I try not to do, but inadvertently, I can’t help but do it as a human.