One month later; becoming selfish

First, I'd like to apologize to my readers that it's taken a month for me to write a new post and give you an update or story. Things have been a little chaotic between trying to find a good palliative care provider that matches my wishes and care. 

Lately, I've started medicine that is helping control the chronic pain associated with heart failure, like muscle weakness, chest pain, shortness of breath, and soreness from these "resistance" band exercises I've wasted time doing for 8 weeks now and have not benefitted from. But enough about physical health. We all know where that story leads, but it's not time yet. 

I want to share a story about myself and my personal philosophy. I always want what is best for others, usually at the cost of my own enjoyment. I've always been selfless and giving, frequently sacrificing my own happiness so that others can benefit in someway. The thought that mutualistic relationships are an actual possibility scares me because I've learned most people don't care enough to help others. Friends included. So I wanted to be the change that I wished to see in the world. Years of self-sacrificing my own happiness so that people I consider friends could benefit has been hard though. I have been walked on, used, taken advantage of, and worst of all: I forgive nearly everything. 

Those times are over now. I deserve a modicum of respect. I want to out my own happiness and needs ahead of those around me. It is time to be selfish and take care of myself and to put my best interests at heart. 

The spark for this emotional revolution is one that hurts me. It hurts me deeply and down to my very core because year after year of forgiving this one particular friend, he tells others lies about me to protect his fragile ego. I've never wished ill of others, and although I'm not going to start today, this is one of the few times I believe somebody deserves the distress, misery, depression and loneliness he has experienced since I've known him. Let's dig into the story.  

Ten years ago I met a friend from playing Destiny. We got along and continued to play playstation together for years. Through him, I got to know several of his friends and even his younger brother. We all bonded through video games and talked together, had group chats, and I even met two of them in person. One of these friends that I grew to know, let's call him "Dillon" suffered from depression like me. Even though he was five years younger than me, I empathized with his feelings and would console him and offer insight through my own personal experiences. He had deeper wounds than just depression. He had very serious codependency issues and always played a poker face about his issues. It's as if one could neglect their problems and act that they don't exist, in the feeble hope they would suddenly vanish. We all know you can't wish away problems though. Fast forward to 2019. We are playing GTA5 online and talking about our feelings, the world, and reflecting on our own thoughts. Later that night, he sends me a nude picture. Maybe it was a thank you, or a subtle expression of curiosity, or just because he knew I thought he was attractive. We got in fights in the future, as all friends do, but he cut me from his life for almost a year. It wasn't unusual; he shelters himself from ever talking about problems or what he is facing. I must've become a focal point for his issues because we had a connection through out mutual understanding of depression and working through it. So I understand being cut from somebody's life as a scapegoat. It has happened multiple times in my life. I am used to being ghosted. In the beginning of 2022, we started talking again and resumed playing games together. For a majority of the year we played playstation and spoke regularly with a group of friends. Around Autumn though, we were separated in a game because I had a PS5 and he was still on PS4. I offered to buy him a PS5 and he could pay me back over time, and I jokingly offered to accept nudes in lieu of payment. When he told me that he would agree to that, I said fuck it and agreed to actually accept them in lieu of payment. He never paid me back at all, in any form. And now he is suddenly saying that I was grooming him, despite never asking for anything when he first sent pictures after dropping out of college. It hurts deep because this is somebody I always considered a friend, no matter how we fought. But this is different. He wants to tarnish any memories people have of me by saying I am a groomer,  even though he was 19 and I was 24. He is straight and I can understand the inherent homophobia, but what will happen to memories or me when I'm not here to defend myself ? It's time to not care about other people and put myself first. So I don't feel bad about posting this because I'll defend myself until my last day. I'm not a groomer. You need to see a therapist and stop bottling your problems. Leave me out of the rest of your life, because you are gone from the rest of mine. It's selfish, and what I deserve: no more negativity. No more self sacrifice. I am the priority now. 

reaching out

A very short post today (also thank you to my loyal readers, I love you all) as I wanted to announce: I'm going to be starting palliative care. I want to try and reach out to as many people from my past as I can and talk to them and enjoy some memories, but most importantly I want to ensure there is no ill will or bad blood. I deactivated my snapchat and social media for a few days while I mediated and tried to figure out if this is the path I want to choose,  and I have decided that it is. It's not giving up, it's getting help along the way.

choices

Despite our best efforts, there are those around us we love when we know we shouldn't. When I was younger, somebody told me thst if you truly love something, "You need to let it go.". My life has felt like that more and more recently. No matter my intentions, I just end up hurting the people I once/cared about. That's a painful juxtaposition to write and even put in words. 
"people I once/cared about"
Do we still care for them, despite the pain they have caused us ? Or perhaps we once cared for them and found the strength to pull away from the tears, the agony, the pain. 
When I was in college, my ex told me a phrase that stuck with me forever, and it's always been true and I could never figure out why. "We are broken glass."
That's it. 
No explanation was needed. You can take a million little shards and fit them back together, cutting and bleeding in the process, or you can appreciate the beauty that something once was. So, I ask you, dear reader, what is more important?  The attempt of putting the glass back together, despite all the pain it will cause, you can glue it and it will be whole but with visible cracks and scars. Or is it more important to cut the losses where they are, and when the glass shattered, keep the memory of the figure as it was, pristine and crystalline, where the light would hit it and refract different colors across the room. Either way, it will never be the same. Nor will the damage to our psyche when the friends we have always believe in, for nearly ten years, give up on you. Do you remember the times as they were, or do you bother hurting yourself trying to piece together what was ? 


The secret lies not in your answer.
It's broken. Nothing you do will change that. All that's left is to turn away from the broken glass, and continue down the dark hallway, alone, as people leave you one by one. There are only a few left. How long until they break? 

cracked

I wanted to post something important. For everyone struggling with invisible illness, there's a second storm coming. Tired from always running from the cloud chasing you. Nobody ever wants to be alone. But when you are too sick, theres the option to turn to modern solutions to keep the social aspect of the persona alive. When that pillar falls, a person has begun the unfortunate process of falling. And fall they shall. 

The entire self is supported by these pillars.  It's no shock that my 5th pillar was gone and obliterated. All I had left standing was the first three pillsrs, and the foundations were starting to crack. Those cracks develope fast, and spread to interfere in all aspect of a person's life. It's the literally equivalent of holding on by a thread, but no thread can hold a tower together for very long. 



Today in memory

Though I've always known that I was smart, I never really applied myself and prepared for things ahead until I met my biology teacher in high school. She was a tough looking, tall, skinny woman who had this wit and cunning about her that looked like you wouldn't want to face her in a chess match. It was around this time in my life that I had my first panic attack,  my depression has grown severe, my family dynamic had just changed completely and I now had a stepmother and stepfather. Not everything was bad at this time though, because I met some friends who, to this day, are the ones I would know will always be there for me; when I close my eyes, when I am scared, when the pain is at its worse or the cold is too bitter, they are the ones there in the dark to help me back up, to protect me, to make me feel safe, to warm me, and to help me move along. I always knew the important of friends, but it wasn't until my biology teacher had I ever met somebody that really made me feel like I was understood. Allow me to clarify. 
Have you ever met somebody and just known deep down, you both would get along ? That's how things were with Ms. Schuler. She was a strong willed woman who had a love for biology and life itself. And I couldn't tell why, but at first encounter it seemed like she knew there was more to me than I let out on the surface. It was about the 3rd week of 10th grade when we had our first quiz, and she asked to speak to me after class. I figured it was about the quiz because my grade wasn't anything special. I was confused when she only asked me "Why are you lazy?" And said nothing more. She didn't elaborate. She didn't explain. Was I lazy because I didn't feel like having gym class next?  Was I lazy for my grade ? Did I forget something ? Knowing I was confused, she continued to tell me about how I was clearly understanding everything in class, but wasn't doing my homework and wasn't doing all of the work on the quiz. She told me I was lazy. That I needed to apply myself. That I had a shot of a future if I wasn't so stubborn thinking I knew everything. I didnt say anything and left once she was finished talking. The next few days of class I didn't speak much either. I didn't feel like listening, maybe because I was too lazy. Until suddenly one day I had trouble breathing and in the middle of our lab I asked her to see the nurse, and after ruling out anything obvious, the nurse just had me sit down on one of the beds and take some time to relax. After several minutes she explained that she thinks I may have been having a panic attack. 
Fast forward to the end of the first quarter, when one day after class I ask Ms. Schuler if I can hand in my lab from the previous week. I told her what was going on and why I was absent, and this was the first time I had seen her really talk without being intimidating. She told me about how everyone has things in life and sometimes they're beyond our control, and that in life no matter what happens all you can do is be prepared and enjoy each day as it comes. Over the course of the year, she would share her stories of backpacking in Canada and going on a cruise to Alaska, driving across Europe and living a wonderful life. During our year of class, I had come to learn that she had breast cancer a few years before and had survived it , with the odds against her. She told me this is the reason she always goes on a vacation each summer, because she knew what life was like with stage 4 breast cancer and she never wanted to let it take away from her the thing she loved most: the ability to enjoy your own life. 
That lesson stuck with me forever. So i alwags promised to do my best do enjoy my life each day, not knowing what the next brings. And when i moved across the country for college and was living in San Francisco, i found out that on this day, September 1, 2012, Betty Jean Schuler passed away from a second battle with cancer. She never let it take from her. 

Coming back from Vegas

So here is a fun story that just happened on Monday. When I booked my flight returning from Las Vegas through American Airlines, I booked it in main cabin and used my miles and $75 fee to upgrade to 1st class. If I fly, I need to do it in first class for three reasons. 1.) Always guaranteed immediate access to my carry-on containing medicine. 2.) Ample room to move my body, arms, and legs to ensure my circulation is okay. 3.) The seats in 1st class have 2 overhead fans per person, allowing more airflow to keep me cool and circulate more air that has less concentrated oxygen when the cabin is pressurized. Every time I fly, I inform the airline and the flight attendants of my condition and they are always accommodating. 

This time, however, a few hours before my flight I get an email from AA telling me that my upgrade has been reverted because the plane is full, but I can either purchase the seat directly for an additional $3000 or they will put me on a standby list for upgrades. I immediately called the airline, only to have them say reservations is busy and they can call me back in 92-116 minutes. I obviously opted to have them call me back. Once they did, the agent said since it's an upgrade system error I would need to be transferred to the frequent flyer program line, AAdvantage. After being transferred, I get the automated system saying they are busy and I can either hold or opt for a call back in 47-51 minutes. I choose for them to call me back. Again. At this point it is around 1AM and I need to be at the airport by 7AM. Once I get the phone call, the woman apologizes and says there was a system error with the upgrade and to not worry as they have refunded my $75 fee and my 5,000 AAdvantage miles. I explained to her that I had booked the seat in February and for medical reasons I need to keep my reservations as they were. She informed me that since it is relating to passenger accommodations, I would need to call the number to request accommodations for this flight at least 48 hours in advance. Despite having done so 6 months in advance, my accommodations were still noted on my ticket and she told me that I should explain the situation to the agent at the gate. Reluctantly I say thank you and wish her a good night . 

Fast forward a few hours and I arrive at the airport, where the check-in counter agent told me that I would need to ask the gate agent for help with this problem, but she said there is still 1 first class seat available for upgrades and that I am #15 on the list. She asked if I would like to purchase the seat directly for my flight and told me the price after taxes and fees would be around $3,000. I left the counter and went to the wheelchair porter who helped me cross the airport and get to the gate. Once I got there, with about 90 minutes until boarding, I spoke to a woman who wore way too much makeup and had the most sincere "I hate you" smile on her face. When she asked if I needed anything, I started explaining my situation to her. She rudely cut me off and said that having a disability isn't an excuse to get an upgrade and that there are people more qualified than me because they have higher tier on their AAdvantage program. At this point it was very clear I was being discriminated against by the gate agent for my disability. She said I can wait in the standby line, but since I'm 15 that's a waste of time because there is only one seat. She asked if I wanted to purchase it, and when she started looking up the price and fees I interrupted her and said that my upgrade was already confirmed and that I got an email saying it was cancelled because the flight was full. When I asked how my upgrade was cancelled because of a full flight but they are still able to sell my seat for another $3000, she said it's because there are better customers who fly more often. She said that my seat in main cabin is still on my ticket and asked if there was anything else she could help me with. 

90 minutes later, I board early and make sure my carry-on with all of my medicine is directly above me and that it will not be moved. I take my seat and take a deep breath, knowing this 4 and a half hour long flight will be horrible. After about 30 minutes, I am sweating profusely and ask the one flight attendant for a glass of water. He hands me one and I ask for ice. He then asks where I am sitting and if it is too hot. When I told him in front of the emergency exit above the right wing, he said he will call up front and ask them to turn the temperature down some. I return to my seat, and sure enough it was actually a little cooler. But that didn't matter because what was happening wasn't temperature related. As I see the same agent pass again, I ask him if they have a first aid kit on board and he asks if something is wrong because I don't look well. I explain to him my situation and he tells the flight attendants in the front of the plane. Suddenly, the plane lights turn on and the front flight attendant is next to me with several items and a first aid kit. He tells me his name and explained that he is also a fire fighter when he is not working, and asked for my symptoms and any relevent medical history or conditions. When I tell him about my heart, he takes a pulse oximeter and blood pressure cuff that only fits on my wrist. He tells me to elevate my left wrist and hold it crossing my chest, while the oximeter on my right finger shows an oxygen of 80%. He tells the flight attendant who gave me water to go get oxygen, and he quickly ran to the front of the plane to get it. 

Next he brings a small oxygen tank, probably the size of two water bottles, equipped with a mask that has the signature yellow plastic that you see on every airline safety video. They put it on and have me breathe in through my nose and out through my mouth. I know the purpose of this is to exhale most of the CO2 from my lungs so that O2 will replace it, thanks to having heart failure for so long. The front end flight attendant tells me he will be right back and the one who gave me water stays by my side. Overhead a PA announcement is made saying there is a medical emergency on-board and if there are any doctors or medical personnel to please identify themselves to a crew member. Two people step up, one man is a registered nurse and the other is a woman who is a medical assistant. The nurse comes over and asks for my permission to talk to the flight attendant about my situation and my medical information I told him. I agree, and he thinks it may be a panic attack because of my pulse. When I told him that my pacemaker has a ventilatory adaptive program, he didn't know what to make of it but said that my oxygen levels are normal. He asked if I would be okay taking the mask off, and I agreed. Within a minute the pulse oximeter was beeping with an alarm, but the blood pressure monitor was showing my blood pressure to still be normal. He concluded that it might be a heart issue and they should contact a doctor. The front end flight attendant then came back and said that they have been speaking to a physician on the ground who asked if I would be comfortable landing and coming to the hospital. He asked if I would be comfortable because I told the flight attendants that I have a DNR & DNI and will not go to a hospital. When I refused, he then suggested they keep me on supplemental O2 for the duration of the flight. For the remainder of the flight, every 20 minutes somebody would come by to change the oxygen tank (except the time I went to the bathroom, I took the mask off but the fire fighter/flight attendant waited at my seat with a new oxygen tank, I returned to my seat at 87%). When they realized the flight was longer than the on-board supplementary oxygen, they checked to see what my saturation was at when they reduced the oxygen release valve on one of the remaining tanks, making it last 45 minutes. I was still saturating at 100% with the lower oxygen levels, so the last 2 remaining tanks ran out at a perfect time because we were descending to a point where the cabin pressure was returning to a normal oxygen concentration. The pilot introduced herself over the intercom system and said that we have been given priority landing and that all passengers must remain seated, even after we arrive at the gate, so that medical personnel can treat a passenger. A woman a few rows behind me complained that "they better not treat him on the plane, I don't want to sit here", but thats just the world we live in. After the EMTs got me off the plane and into another wheelchair, the one explained that with a DNR there isn't much they can do other than make sure I'm comfortable. I told him I was feeling better now that I could breathe and that I just wanted to leave so I can go home and forget rest. The airport security, paramedics, and police all exchanged forms for each other to sign before the airline's wheelchair porter brought me and my suitcase towards my dad's car. I was never so excited to be back in Philadelphia before. 

The 1st Day of Oceanography 101

In my 2nd semester at college, I took a general education course, OCN101: Our Dynamic Ocean. I thought it would be fun to do a geoscience course that wasn't geology, and of the physical science requirements this one sounded the most interesting. 

When I showed up to a very packed class, where people were standing at the back wall of the lecture hall because every seat was filled, I found an empty seat in the very front of the room. After a few minutes of people wondering if our professor forgot the class or cancelled it and didn't tell anybody, the lights dimmed and "Beyond the Sea" by Bobby Darin starts playing. In walks this tall, lanky, and quirky man dressed in bright pastel colors, with a striped jacket, a cane that he is twirling and dancing with, and a top hat. The entire class is staring as this very weird man starts dancing and grabbing students by the hand and giving them a spin. He dances his way around the auditorium for an entire three minutes without saying a single word, stretching his cane out in the air every time the drums reach their crescendo, getting up on some of the tables and hopping across them in tune with the song's tempo, and finally waving goodbye from his top hat with a mild salute as the song starts to fade and Bobby Darin says goodbye, so long, bye bye, sailing. By the time that song is over, he turns around from being in the center of the front of the class and introduces himself as "Ocean Matt" and welcomes us to Oceanography 101. I want to say that was the most eventful thing that happened that class, but it wasn't. How could somebody outdo such a performance? In the middle of a very long rant about how people are forced to take classes to be "well-rounded" but makes them uninterested in the actual subject matter of the important classes that teach you about material that is actually happening in real time, where just several thousand feet away we can see it, he starts yelling about people turning to technology to distract themselves from the world. He then grabs a green bottle that was innocently sitting on the front table where the TA's sat, and talks about the importance of water. As he gets louder talking about how important water is and that its not an infinite supply but yet people ignore it and just focus on their phones and technology, he shouts that we all need to put away our devices and pay attention to whats happening around us. When most of the class has long been ignoring his very drawn-out rant, he takes a sip of a regular water bottle and puts it down, and says something along the lines of how refreshing water is when we finally let go of distractions and recognize it. He then violently shakes the green bottle he is holding, and the few students who were paying attention got up and moved to the sides of the room. Myself being one of them. He aims the seltzer at the crowd of distracted students, in the middle of class, and unscrews the lid. Continuously shaking it and spraying everybody with sparkling water, he keeps shouting "It's just water! We don't need to learn about it !". The look on everybody's face was precious. Fury, disgust, and some of them actually laughing at what had just happened. Those of us who stood on the side were obviously laughing. This was going to be a fun class.

Update : July 2023

 As I write this, I am struggling with decisions to make regarding my future. Ever since I had my life stolen from me, abruptly, 6 years ago, my decline in physical health put a heavy burden on my already fragile mental health. I wanted to apologize for not posting the past few weeks, and that guilt was another burden I don't think I should be bearing. 


My social life is almost entirely digital. I have few friends I would ever allow see me today in real life. Mostly because I don't want people to see how far I've fallen from what I used to be. I worked hard, took 18 units a semester, worked 32-44 hours a week, managed a store, exercised, went out with friends weekly, and had a great life. Its unfair that it was all taken from me. Now the most I can manage is doing laundry, and that takes all of the energy I have in a day. According to my last test results, after walking at normal pace for me (2mph @ no incline),  I enter anaerobic exercise within 4 minutes. I quite literally cannot do anything. So, in order to have a social life, I've used PlayStation for the longest time. Granted that the online world can be much less personal than the real world, but after talking to people for 10+ years or some for 3 years every single day, you know them on a level that is on par with a physical friendship. 


I don't even feel like getting into the psychology or sociological benefits or physical vs digital friendships on a person's social needs, but know that I have never felt a lack of friends or support for the longest time. Until recently. Lately, I have been alone. Day after day, not playing with anybody or talking to anybody. Its been like this for at least a month now and the amount of damage it does to a person's psyche is real, very real. I feel like I am alone in the world without my friends to talk to, and though I understand that many of them have justified reasons for not being there to play games or to even talk, there are those who don't. There are those who I've known for 11 years and have even met in real life and I feel like a stranger now. Perhaps, after all of this time, I am just a ghost. Living in fear of what people's memory of me will be but no longer able to build memories with people. The level of depression I have makes me think of asking my doctor to write my referral for another round of ECT treatments. The positive side is that I will no longer be depressed, but the negative is that I will lose more of my memory and have more cognitive damage. To summarize: I haven't been writing a blog post this month much because I've been weighing an important decision. When your body is your own enemy and the only friend you have is your brain, it becomes a battle to contain the id when your superego is wounded; the ego no longer can protect the boundaries. I think I've thought too much. Until next time. 

Roadtrip

July 2, 2018
My dad and brother arrive and take a taxi to where I live. They pack everything into my car as we're preparing to drive from San Francisco to New Brunswick, NJ. I'm supposed to be going to Robert Wood Johnson and go in through the ER, where they'll no doubt admit me for heart failure and then the transplant surgeon will look for me under the patients under the rotation list. That's the plan, and since Dr. Pham arranged it, I trusted it. It wasn't his first choice, because I was supposed to go to Drexel's hospital, Hahnemann. Dr. Pham knew the chief of cardiology there from annual transplant conferences, but their low number of patients cost them funding which, in turn, cost them their renewal money for licensing as a UNOS heart transplant center. 
I said goodbye to my friend who owned the house, Mary, and my other housemates Sebastian & his brother Christopher. I left behind several things that either were too large or just not a priority over what else would fit in the car. I'm hoping to this day that somebody appreciated my cologne collection because I had a very fine one. 
The drive to NJ was either 3 or 4 days long. My brother and dad complained how cold the car was, and always were wrapped in blankets or wearing hoodies, despite outside in some of the areas we crossed being in the 100s. Inside I needed the car to be cold because it helps me breathe easier. Even to this day I thrive in the cold and suffer greatly when it's hot or even warm outside. Each night we stopped at a hotel so they could sleep because they wouldn't let me drive. The only good thing about the road trip was my cat lying on my chest the entire ride. Fast forward a few days and we arrive to RWJ, where I could tell nobody talked to each other on their cardiology team. 

Question for you

Just posting today out of curiosity while I work around writer's block. 

What is one song who's lyrics are especially impactful to you? Comment or use the the submission form the the bottom of the page please.