2023

From my notes app:                                                        

There is no use in comparing who has it worse. If it is painful, that should be all that matters. So when someone is grieving, it's not the place to bring up your own grief. Offer sympathy, ask questions. In a world that tries to find order in the unknown, I have also been forced rank my pain. But I soon found out, it didn’t matter whether it was a stomach or a headache. I didn’t want either. I wanted no pain. I wanted to be healthy.

I have been told that this is just part of life. That I just need to cope and persevere. Easier said and done. It sounds belittling, as if they have gone through such life trials, survived, and are now imparting their life wisdom upon me. As if they are comparing their life to mine, as if my pain can be viewed so impassively from the heavens and eyes of an immortal. The condescension sickens me. It’s more okay coming from my parents because I understand what they’ve been through but it feels wrong coming from a friend.

Why are more kids getting diagnosed with cancer and other chronic illnesses these days? I am not a scientist. I'm just a person affected, wondering when did it all go wrong. How could this have happened? I wouldn’t have ever thought this could’ve happened to me before. My family has attained a privileged way of living througuhout the years, while I have to live with chronic pain. I am reminded that for every positive there’s a negative.

I think it’s a feat I never seriously contemplated suicide. I’ve thought about it. I’ve looked over the balcony, looked at the knife but knew I would never actually do it. I was always too scared of the pain and the consequences. In a cowardly way, I’m a survivor. I think if death were to take me, I would be scared of the unknown. I would be sad that I could not watch any more Chinese dramas or talk to my parents. I used to be deathly afraid of death, but I think I’ve become better at accepting its imminence, whether near or far.

Things that I learned after getting diagnosed with cancer:

• There’s no point in worrying about the future or stressing about anything really.
• Close family are the only ones I can rely on.
• Anything can happen to anyone.
• Why me? I’ll just have to accept that I have no answer to that question.
• You will truly never know what someone is going through.
• It’s okay to take things slow. Though I wish to treat every day as if it were my last, my physical condition makes it impossible.
• There are so many different types of cancer, so there isn’t one cure. Even cancers with a cure might not have the most effective cure.
• Do not expect much from other people. They will move on with their lives. They may not react the way you hoped they would.

Notes for upcoming neurologist appointment:                                             

It's in those cliche movies that teenagers tell their parents, “You don’t understand me!” I'm not be a teenager anymore. I'm twenty-one years old, but I have felt this way more now than ever. If I don’t say anything, people think I’m okay. But for the past year, I haven’t been okay. I feel like I’ve been slowly wasting away inside. The pain, the loneliness, the fatigue, the worrying. I live because that is all I know what to do, and dying is scary. I don’t know what depression is supposed to feel like, but I’m afraid that if I have it, it’ll make me seem weak and lead people to see me a certain way.

With dad, I have said things here and there. Maybe he doesn’t know it’s a cry for help, or he doesn’t care enough to look further. He’s always gone these days, making trips for work or staying overnight at his girlfriend’s place. I’ve been cooped up inside this house for the past year, and now I’m always alone in this place. There is no warmth here. I get so scared at night, it’s hard to stay in the kitchen for long, and I have to lock the bedroom doors when I sleep. I spend hours on call with mom, sometimes not even talking, just because I need someone there. It’s difficult asking things from my dad because I’m afraid of troubling him, and I can rarely tell what he’s thinking. The previous incident with my mom only proved that he doesn’t understand me, and he won’t prioritize my feelings. It hurts, and it’s lonely.

A reddit draft that I never posted: Do I have depression, or is it just cancer and my dad’s girlfriend?

I got diagnosed with a chronic blood cancer earlier this year. It has caused other health issues, like my daily migraines and photosensitivity. I’m constantly in pain, discomfort, or fatigued. My support system has not been greatest. I withdrew from my previous college and don’t talk to my friends often. I was pretty hurt by my closest friend for not being there for me when I was experiencing symptoms. Even when I was diagnosed, she just told me things like “it’ll be okay” and “that’s just life.” We still call maybe once every few months for old times sake, but she’s never interested in hearing about my condition. I don’t know anyone my age in my dad’s city, and I don’t have the energy to make new friends. It’s hard for me to be on social media before I feel like I’m falling behind and missing out. I try not to think about the fact that I can’t play volleyball or travel.

My parents got divorced around the same time I was diagnosed. It didn’t affect me at that time because their relationship was still peaceful, and they had already been separated because of work as I was growing up. Although I didn’t have any friends to lean on, I at least had my family. But then my dad got a girlfriend 2 months ago, and things changed. My mom lives in a different city, but he refused to let her stay over at his place during my birthday week. He wasn’t even there that week because of a work trip, so I was alone while she stayed at a hotel. I knew his girlfriend had something to do with it (I overheard them). I had even cried to my father, telling him that my mom was still my family even if she was his ex-wife, yet he wouldn’t budge. This isn’t the only thing he’s done either, so I have a lot of emotional pain that I can’t get over.

The only person I ever see regularly is my dad, but now he’s always gone these days, either going to work trips or staying over at his girlfriend’s place. I’ve been cooped up at this house for the past year, and now I’m always alone. I feel like he should take the initiative talking to me, knowing what I’m going through. I’m in constant pain, but he doesn’t care enough to take it seriously. I feel so incredibly lonely, and I sometimes get scared when I’m alone at night. I spend hours on the phone with my mom everyday, sometimes not even talking, just because I need someone there. During the day, I just lie on my bed and on there, I watch random things or doze off. My symptoms make it hard to do anything else.

I often feel like I’m going through the motions of the day. I feel like I’m living because it’s the only the I know how to do, and dying is scary. I’m still holding onto the hope that things will get better, but I’m tired of the constant pain. I sometimes wonder why I exist when I just live to suffer, when my family life has become so messy and I can't even rely on my parents anymore. I’ve been crying a lot, whenever the pain gets too much or people do things that I get hurt by. Sometimes I cry randomly, just thinking about past events. It can also get overwhelming handling everything on my own: the doctors appts, my meds, speaking with people on the phone, etc

I don’t know if it is normal to feel this way, given my circumstances. I know if I didn’t feel anymore pain, I wouldn’t feel this way anymore. My hematologist always asks me straight-up if I have depression every time I have an appointment, and I always say “no” because it makes me feel awkward. I’m also there with my dad, so even if I said otherwise, what would she even do to help?

It is in human nature to not appreciate the things you have until you lose them. It is in human nature to wish for things you haven’t experienced before and don’t truly understand, nonetheless thinking it would be better than your current circumstances. It seems like human nature is generally unsympathetic and isolating. There is no one you can truly rely on but yourself, but even though I’m supposed to understand myself the best, I have plenty of self-doubts. We are always alone, be it in society or ourselves. I never understood solitary confinement, but I can now begin to see its cruelty, of being separated from everyone else and lost in your own thoughts.

For me, I lost my health and my strength. I lost the simplicity of everyday life and a sense of infinite time and possibilities. It’s like I am just existing, holding onto some shred of hope that with time, things will get better. But unlike anything I can work towards, this is much out of my control. Unable to do this or that, and the box closes in on me. I still haven’t found a migraine preventative that's worked, and the only painkillers I can take are Tylenol and Fioricet because of my blood clot, which my neurologist tries to limit due to the risks of rebound headaches. But I have nothing else to turn to, and I’m beyond tired of enduring and fretting over the consequences. It’s just like the female character in Lost You Forever said: the more pain I experience, the more afraid I am of the pain. With no end in sight, how much longer is life worth living for any sane person?

There have been moments when I thought I was depressed, but ultimately, I do not think this is what it is. If I didn’t have migraines anymore, I would be able to run a marathon. It’s not my emotional state that’s limiting me, but my physical state. I went to the reddit community for depression and searched “cancer” to see if anyone had similar experiences as me, but all that did was make me angry and bitter. There were people wishing they had cancer, maybe so they could elicit the sympathy and benefits of the diagnosis, or maybe so they could have an easy way out–as if everyone with cancer had good support systems and bearable symptoms. I likely wasn’t the target audience of these posts, but it was one of the ‘who has it worse’ things that lacked sensitivity. It felt unfair that I wanted to live so desperately, yet the only form of living was to live in pain. So, I couldn't find the heart in me to understand people who were strong and healthy and still lacked the willpower to live.

I didn’t know much about cancer before getting diagnosed with primary myelofibrosis/polycythemia vera. With all the headlines about ‘finding a cure for cancer,’ I had always assumed cancer was just an overproduction of abnormal cells, which could then be cured if found early enough. Funnily enough, the hardest part wasn’t getting diagnosed with anything at all. The hardest part was still my migraines and the feeling that I haven’t been able to live my life to its fullest. There hasn’t been a single day this past year where I haven’t felt some level of pain or discomfort. If I were to have a rare illness with a life expectancy so bleak (although the data is limited and probably skewed), then at least let me be able to go to college, travel the world, and play volleyball with ease. I don’t know where I get this hope or optimism from, but I’m still holding onto the day this will come. It’s the only thing I can look forward to.

It’s been drilled in my mind that with suffering comes strength, and I am trying my best to treat this as a war, in which ‘God gives His toughest battles to His strongest soldiers.’ But not all soldiers make it unscathed. Some die, some desert, others leave with internal and external scars. I’m also afraid that if this war drags on, the stalemate lengthens, and I will likewise lose my morale. I’m afraid by the time I’m thirty, climbing forty, and I’m still stuck in the same place, I’ll wonder what’s the point of it all? The first portion of my life spent in a haze, the second portion of my life spent in pain, but I continue fighting because it’s the only thing I know how to do.

Due to my condition and my circumstances, I feel like I can’t relate to anyone in the support groups, as most of these people are either older and experiencing a different type of MPN, or experiencing different symptoms. I feel so utterly alone, amongst these people and even my friends and family. I have started to expect less from people, in hopes of being less disappointed by them. Although I try to be optimistic about my future, my perspective of human nature has become increasingly pessimistic.

It is thought that when you get a chronic illness, or get diagnosed with cancer, the people around you will treat you with more care. This isn’t true. I have realized how disappointing people can be–how once you have lost your purpose, your friends will start drifting away from you because you’ve changed and aren’t as fun to be around anymore. They don’t know how to react around you, they don’t know how to talk to you about serious things, and they are too lost in their own world to try and understand yours. I began to see friendships as a transaction of give and take, where I stopped being able to do any of the giving and had to withdraw myself more and more. Unable to go out, unable to talk about the things I used to, or conjure my energy. Perhaps a lot of this comes from my own worries of oversharing and burdening others, or perhaps other people simply did not make me feel comfortable enough to share and burden them with what I was going through. No one seems to like too much vulnerability or negativity, and I have been simply too stuck in my own world and my own problems to care much about theirs. It all seemed trivial.

At my lowest times in college, I found relief that at least I still had my family. At least I still had my father and my mother, I thought. It didn’t matter that they got divorced on paper. They had been separated for a long time anyway, and I thought things would stay the same. Then my father got a girlfriend, and things went downhill. He didn’t let my mother stay over at his place during my birthday week, after she flew in overnight from San Francisco. I didn’t know what point he was trying to prove, when he wasn’t even going to be in Chicago and had made a last-minute work trip to China, probably to evade my mom. I didn’t care about the cake or the gifts, but I made it clear that I cared about this. I was disappointed again by someone close to me. I have always tried to be an understanding daughter–always supporting my parent’s career choices, wanting my father to be happy with his girlfriend, always lending a listening ear. Even though I said it was up to him, a fool would think that I had truly meant it. How many birthdays before my twenty-first had he already missed?

I have a bottom line, after all. I have things I can’t get over. I also have my limits. After all the understanding I have shown throughout the years, where was the same consideration for me when I expressed my wishes now with so much certainty? If he couldn’t have come to my birthday, he could’ve at least let my mother spend more time with me. I shouldn’t have to explain each time in detail for people to understand that it hasn’t been easy for me, as if I have to prove something. But he had already made up his mind, and there was no dissuading him in a conversation of dishonesty. Reading about Buddhism and Taoism had clearly been for nothing. It would be self-centered to think my mother wanted anything to do with him, and selfish to think I’m not being affected by any of this.

From a you who has lost hope in people but not yet in life.

Perhaps I’m too harsh on my father. Despite some irreconcilable decisions he’s made, he’s not a bad person. I can remember the good things he’s done. But it’s as though he can’t see clearly through his muddle-headedness or understand why I act the way I do. The family I’ve known, divided in such a clean-cut, ugly, unnecessary fashion. Even though my parents have always been separated, it’s different now that there’s someone new and whose own wants and needs have started to supercede my own. My family doesn’t consist of the new girlfriend who has only been in my life here and there for the past 1-2 months. In my world, it will always consist of my mother and my father. He doesn’t understand the insecurity I feel when he behaves this way, now that I’ve become the daughter of the ex-wife he resents so much. I tried asking him to think of me, but it’s as if he’s incapable of understanding my feelings, or he simply doesn’t want to.

It’s true that my mother and I have had our rough patches and our ugly moments. She may have hurt me a lot, and even now, I may be unconsciously remembering things in our past. But despite it all, I have certain values on family. Perhaps that is why I’ve always been cynical of romantic relationships, as they are so easily soured over the years. I’m not childish enough to hold grudges over the little things, as I can barely remember the specifics of what my mother and I even fought about. I think it is silly to always think of yourself as the sole victim. It is silly to think that I haven’t hurt her back just as much, so I have found it easier to let things go. It is silly to think that we weren’t all just young and stupid back then, so it’s better off to stop thinking about the past and focus more on the present.

I saw the decision my father made as one between his girlfriend and me, and from that point on, the truth revealed itself. It became clear that I wasn’t his priority, when he had said I was. It hurt all the more because I was in pain and lonely, and he should’ve thought to make things easier for me. I am no fool to think that his girlfriend didn’t have a role in his decision. He might have thought it was necessary to divide these two women in his life, his ex-wife and girlfriend. But that is a narrow-minded viewpoint, take it from someone who grew up in a generation with a 50% divorce rate. This hostility and resentment shouldn’t be normal, and I hope my grandparents are disappointed in him. Lots of exes, especially for the sake of their children, have put aside their selfishness and gotten along.

So, I have no motivation to make an extra effort with my father’s girlfriend. I really did want to try at first, in the name of womanhood and wanting to make things easier for my father. When I met her for the first time, I told her to not put herself down, that she might think my dad was great but she also had good points. But now, every time I look at her, I am reminded of the role she played. She is the very antithesis of her name 'Grace' because what she did was neither kind nor considerate of my situation. It was purely due to her insecurity over my mother’s visit, and because of that, my mother had to stay in a hotel in Chicago. And I spent many nights crying and couldn’t look at either my father nor his girlfriend the same afterwards. It was the disrespect, whenever my father talked about my mother in front of me. The audacity, for letting his girlfriend listen into their conversation when he called my mom to discuss her arrival. It was the self-centeredness of it all.

For her to push and for my father to be pushed, I wondered just how much I meant to my father in the face of another woman. I’m twenty-one years old, yet I still had to be reprimanded when my father thought he didn’t hear me say “hi” to his girlfriend. So what if I didn’t? What has she done that’s worthy of anything? Isn’t my indignation justified? She’s done the barest of what another human being should do, and far less than what a father’s girlfriend should do. My father acts like her giving me a calculator and some snacks is something to be super grateful about, but these are mere pleasantries. Even an acquaintance would ask how I’m doing or at least tell me to feel better soon, yet I am taught to believe that I am asking for too much. I am reminded over and over again to not expect too much from other people.

I have been writing a lot lately. There is a lot I keep inside of me that seems to flow more easily through written form. It’s something I’ve wanted to do for a while but haven't actually been able to commit to because of slight perfectionist tendencies. I’m always scared of what other people are thinking of me, so even when I write on this blank page alone, I wonder if anyone will stumble upon these words. What kind of person will they make me out to be? Just how will they nitpick my words? It is so easy to judge others–to analyze a real and complex person–for the sake of simplicity like second nature. I have witnessed others do it to people on television, and just how quickly the tides turn on social media.

A part of me wants to be heard–by someone, anyone in the future, but another part of me knows my words will be hurtful. Nonetheless, my goal is to be unfiltered. I want to be a straight-forward person. I want to be able to say what I’m feeling in the moment and express it authentically.

I don’t know how other people do it, living with this kind of pain. Constantly having to be careful, going about their day in a daze. I’m never completely present. At its best, the pain is bearable. At its worst, I’m writhing, body contorting, vocalizing every infliction in an effort to make time go a little faster. I’m so sick and fucking tired of waking up in my bed, then having to lie upon this same bed during the day. I’m so sick and fucking tired of blocking off a past where I used to be normal and a dream-like future that only gets more distant.

At least I’m lucky, I think to myself, that I have financially stable parents and don’t have to worry about my future. There are people out there who experience this much pain, yet have to stress about so much more. Nonetheless, this barely comforts me. It just makes me think that this is the least Life could give me, and if it were to ever take this piece of solace away, then I would truly be lost.

It’s been a while since I’ve written, not because I didn’t want to but because I’ve been drowning in schoolwork. After a rocky start with my transfer credits that led to late registration, and a severe migraine that led to a week in the hospital, I began chasing a train of weekly quizzes, weekly homework, and now, monthly exams. It’s like I’m taking a full-course load, when I’m only taking one class. I thought I could easily handle it while dealing with my doctors appointments and health symptoms, but it’s taking up a lot more out of me than anticipated. I tend to think I’m smarter than the average person, but this Calculus 3 course is making me doubt that.

I am actually certain this is why my migraines have gotten worse recently. After the first week of school, I was hospitalized due to a migraine that couldn’t be alleviated with Tylenol. Although I slowly got better after a week of steroids, I felt the pain levels increase a couple times, then more sharply again, after my math exam. It was because I had gone out a few days in a row: grocery shopping on Sunday, a doctor’s appointment and lunch on Monday, a stressful day of studying on Tuesday, a two-hour exam on Wednesday. Before this change of routine, I had always been cooped up at home and spent most of my time lazing around.

Sometimes I wonder to myself, why am I going to school? Why am I making my life harder for myself? It’s never too late to withdraw. At least, I didn’t need to go back to school so soon. Am I desperate for a sense of normalcy, for something substantial to do, for a sense of routine, for validation, or for human connection? What am I looking for out of this? Before everything, I desperately wanted to be independent and get a job as soon as possible, so I could buy the things I wanted, eat what I wanted, and do whatever I wanted. I didn’t want to live under my parent’s scrutiny anymore, not because they were super strict, but because it simply felt suffocating living as someone’s dependent, being judged for my wants and having to ask for things yet being too afraid to ask. But with my circumstances now, I know that independence is far away, and I’ve become more okay with that.

Whatever the case, at least I know my limits now. Although it’s disheartening that I cannot even do this much, since I don’t even attend the lectures and just go to the weekly quizzes, this gives me a better idea of how much I can handle in the future–which is not much at all, unless I find better solutions for the migraines. That’s how I try to console myself, at least, by thinking that I couldn’t have stayed at home forever. And that at least now, I am trying a new treatment, propofol infusions, next week. I have decided that I’m not in a rush to finish college either, since Illinois Tech doesn’t have online classes and their attendance policy is not flexible for people like me at all. I’m lucky that my professor doesn’t take attendance, but I wonder what I’m going to do next semester.