somewhat living in a movie | Bi-Weekly Update

New book posts:

Just one post this time. I’m trying to manage my health & catching up to this semester’s workload … seeing as I’m 1/4 into the semester and was so behind bc of reasons outside my control, but I’m truly starting to catch up with my readings & weekly sheets of problems to work through.

Other books I’ve been reading:

One goal this year is to spend less money on books by using the library a lot more. I’ve figured out how to “order” books to my local one now and also which one’s they have semi-regularly in stock, so I just got the Heartstopper vol. 2 & 3 by Alice Oseman and I’m so excited, having just begun to read them.

Added to TBR:

  • This Is Where the World Ends by Amy Zhang (young adult): I truly can’t remember how this book got on my radar, it’s baffling, it just suddenly was on my TBR and I’ve lost all thoughts around why
  • The Strange Library by Haruki Murakami (magical realism): I’d never heard about this Murakami book before, seems promising.
  • The Legend of Korra Turf Wars Part One (graphic novel, lgbt f/f): from the creators of the Avatar Last Airbender spin-off about Korra, this continues where the animated tv series stops and hopefully will motivate me to actually finish the tv series.
  • Astrobiology: A Very Short Introduction by David C. Catling: I also am on physics/stem tiktok and someone recommended the oxford’s very short introduction series to people who want to get into something and Astrobiology is definitely one of those things I would really really want to know more about. It’s also like 160 pages.
  • Kant: A Very Short Introduction by Roger Scruton. I’m forced to take philosophy (science-related) as an obligatory class next semester and hopefully over the christmas I can read myself up, so I can actually focus on something else instead. I like diving into philosophy ocassionally, but not this “obligatory” aspect.
  • Black Code: Inside the Battle for Cyberspace by Ronald J. Deibert (nonfiction about tech and safety): either Edward Snowden recommended this book or I found it while reasearching more around one of the themes he talks about.

Three things on my mind:

  • We’re all struggling in this mid-corona university daily life, even though my friends in other cities are struggling with a lot more cases. Fortunately my city have barely any at the moment, meaning we’re starting to find an altered normal to get back to. But Thursday was a strange day. So many things went wrong this day that you’re just going to have to take my word for it, but let me explain that until dinner time I had been on campus for the first time in a while getting nothing done because anxiety, taken three annoying calls, half-hour bike ride to an important appointment that got cancelled, was nearly blown off the road with the bike as a storm was passing nearby, got lost on the small roads trying to get home through an unfamiliar, safer way. Oh, I forgot the part where a half-naked very nice man opened his curtains to find me tearing up my fingers trying to remove a baggage strap from my gears as I was running late and lending me his scissors. And then we’re back to the truly interesting part where three roommates found an unopened, old, 200 kg safe being given away and decided to get it. I sat there, truly exhausted and cold, as they discussed it. I had yet to eat anything but a piece of cake because I was supposed to have gotten home a long time ago. Still, I quickly grabbed something to eat and joined several long walks as it’s not every day old & new roommates bond together to get equipment to carry that safe up a staircase and home, through multiple busy roads. It got opened over the weekend, it wasn’t an easy task. It was empty in the end, but the adventure felt worth it. I love living where I do, a year later it is as exciting as ever, even if we also had a frying pan thrown against our very sturdy door yesterday. I’m suspecting the floor above us, and that we have to prepare for a more long-running war. We might have showed up at their door last week investigating the loud noises that had been increasing tenfold lately.
  • I’m finally committing to actually read the books of my small uni book club now that we’re not spending way too much time on Lolita, meaning I have to re-read “The Trial” by Kafka and read “Dune” by Frank Herbert. Yeah, I know I already should’ve read Dune as the fantasy geek that occassionally goes into sci-fi territory that I am.
  • I’m stressed. We’re all stressed. Go buy an more expensive or interesting coffee type than usual and watch the autumn leaves fall like raindrops from the trees if the wind is blowing. It is what I did today, as my hospital visits won’t get less stressful in the near future and I need to decompress afterwards. It’s gotten so difficult to divide what is free time and not as a student during corona, especially if you like me have hospital appoinments (or equivalent) randomly during the day that keep you from having a schedule that looks anything similar every week. I do need to learn to see this type of activity as of the same value (because it’s actually more valuable) as studying or schoolwork, especially as it’s more taxing. It truly isn’t that easy to be kind to oneself.

Chronically Ill in University: Crohn’s Disease Awareness

I’ve tried to write this post many times, but the words just don’t look right together. I’ve already missed crohn’s disease awereness day two years in a row, so that says something about my qualms about writing this. But I think I’ve figured out what I want to say, or at least some of it.

Right now, today, my disease should be under control. You can live a normal life with crohn’s disease, they say. I was relieved when I got the diagnosis, because it only put words to something my body had been going through for so many years, so much time spent searching. And yet now, today, I am about to fail two out of five exams this semester. I am in the likely best university in my country studying physics, in my first year. And since before corona started I have been so ill, in various shapes, but of course I couldn’t figure out what was going on because everything shut down because of corona. (I also wasn’t allowed to get an actual corona test.)

Yet, going through so many years with people telling me that my pain, my disease, wasn’t real – that’s what I fall back on. That’s what’s in my head, trying to shame me into pushing through even though I know that’s not true. I know that now, I knew that then. Yet crohn’s is an often invisible illness, I’ve often looked my “best” right before collapsing or having to be admitted to the hospital or spending months bedridden in pain. I was complimented on how I’d lost weight, even as it was harder and harder to keep up in taekwondo class because spinning made me feel like I would faint and as I laid down on my stomach on the floor after push-ups, huge symmetrical blue and purple bruises would blossom on my hips and I had no idea why. I’ve made so many coping tactics, some good, some maybe not so, but I hate it when people critic them as if they know where I’m coming from.

I’ve made so much progress. And it more often than not feels like I regress again, every time I get sick with something new, or my crohn’s gets worse, but that’s not the right words to use. I don’t regress, because I’m not in control of it. And yet, it’s me that have to pick myself up again every time I lose muscle, everytime I have spent a month nearly dying, everytime I watch my brother go through the same fucking illness as me. And up ’til this point, there’s been little help to get compared to the criticism I’ve had to fight through.

Maybe I didn’t manage to figure out what was wrong and fix it in time for these last two exams. I did manage to pull myself together and focus enough that I completed the first three. It’s been a hell of a couple months. The only reason I’m hurting about ‘failing’ right now is that I’ve been in more pain before and still pulled through, but I now realize that I shouldn’t have had to. And with that ounce of compassion for myself I’m going to let that shame go, and not see this as a sign that I will never be able to do this. I will pull myself up again alone, this time as well. Eventually.

Say fuck you to everyone who expects you to have a completely normal life with this disease. ‘You can live a normal life with crohn’s disease’ does not mean you have to live up to that, it’s to not exclude possibilities when you feel most hopeless. And I will fight in any way I can again anyone else feeling as hopeless as I’ve been made to feel about my chronic illnesses.

I made this embroidery staying up too many nights trying to keep sane before my painkillers set in and the stomach pain withdrew enough to let me sleep. Here’s to hoping for a better and more energic summer than spring.

Going to University with Chronical Illnesses | Planning #1

This is not a how-to post and I unfortunately don’t have much advice to give. I would actually love to hear some advice if you got it. But I still want to make a post during this start of university where I just discuss my worries surrounding starting this new, stressful-for-normal-people every day.

To say something about how I got here; I really fought for an education. I think a lot of people with chronic illnesses and other disabilities have to, to a degree, no matter where they come from. Even though I live in Norway with protected rights to education, there was so much working against me to get here. But that is its own story. The thing is; I got here. I’m surprised and relieved.

I love the people surrounding me and how smart they are. I love taking it all it and hanging out with people and barely grasping what is happening in math lectures. I’m on a roll, about to be caught up mostly in different aspects of my life. A balance is reachable! And then my body will shut down. It did this week, for multiple reasons. And while I’ve been able to take a break from thinking about illness until now, even though I’ve had a base-level of pain with me every day (some days worse than other), now I have to call doctors and switch one of the many medicines I’m on and keep this part of my life going with filling out forms and sending letters and … it’s a lot.

Some of my fellow physics students are the cliches of having their head so deep in a book that they forget about the world around them until someone brings them coffee/food/calls and asks them why the hell they’re not meeting them as planned. I can do that as well … for a couple hours. But if I was that person I would probably not survive long, or at minimum – in the short run – suffer greatly. I’m forced to have at least this part of my life, the medical, organized. And it’s something you never can plan for.

How to plan if you’re chronically ill:

  • Don’t. Or at least that’s what I’ve landed on after many years. I will have plans, and if other people are involved, sometimes you got to attach dates to those plans. But always have a way out, depending on how important that thing is for you. And for the less important things, keep the plan an idea as long as possible (this only works if you communicate well with those around you, and evaluate the possibilities of the individual situation). And depending on that week or day’s energy/pain level, set or change those plans. To sum up; no plans are set in stone.
  • Know that there will be x amount of days/weeks of school work lost due to illness, try not to be angry or stressed out at yourself when it happens, roll with the punches. It’s so difficult. I’m not doing great at it right now. You’re at least learning efficiency when you get back.
  • Try to get as much help as possible. To learn things, to get notes. From anyone. Like be honest and reach out and know that you have a good reason. Try to be that person to others when you have better periods and they got issues, if possible.
  • Always book those hospital/doctor appointments as soon as possible. It’s easier now that I’ve actually got free time sometime during the day, mostly, instead of in high school sneaking out of class and sitting on the bathroom floor of the handicap stall (one of many, I wasn’t in anyone’s way) for twenty minutes while waiting to get through on the phone. It’s still easy to avoid. But it doesn’t get better.

Disability in Books #PrideLibrary19 ūüĆą

The Pride Library 2019 Challenge is hosted by Library Looter, Anniek’s Library and Michelle Likes Things. Join in on it anytime or link your post in the comments so I see it! Also all reviews I’ve written will be linked.

I know that “Far From You” by Tess Sharpe and “History Is All You Left Me” by Adam Silvera, which I have yet to read, has main characters that fit under this banner of being disabled/neurodiverse. But I want to take this chance to write a quick post about my thoughts on reading about disabilities and the very clear reason why I haven’t been doing it so far. Full disclosure, I’ve rephrased this post a couple times and am still nervous, but also very curious about people’s thoughts on this!

My background

I grew up chronically ill. I still am, just last summer I could barely walk and was in a wheelchair for a short time, but with the right medicines I’m back on my feet, if not healthy. I tried to let it not define me growing up, it was extremely important for a sense of identity and belonging. I didn’t have a name, a diagnosis, to what I was struggling with, I knew it as something that was only causing me problems and leaving me without hope. Nowadays, I have a generally much more healthy relationship with being sick, with shorter periods of it being really dark and awful. There’s times where it’s very visible that I’m ill, like for a long period my joints were fucked up, but for the most part it’s been invisible which comes with its own challenges (that’s another post).

Books

Literature and reading has both been a source of escape, but also to learn about other people’s perspectives, and that’s one reason why diversity and representation is so important. I like learning about other people’s mindset, cultures, problems, whatever it might be, through novels. But I was burned too many times as a disabled kid trying to pick up books about or with chronically ill or disabled people. Being sick was an experience I knew too well, that I was surrounded with 24/7, so when the author eventually got so many things wrong or forced a strange mindset on the character, it cut so deep. That’s the importance of #ownvoices authors. There are authors that doesn’t need to go through the exact experiences and can still write really good diverse novels through skill & lots and lots of research, but there’s also those books that without this just turn out really really bad. And that hurts if you’re too close to it. I didn’t need characters being magically cured or having no illness/physical problem after all at the end of the book. I needed realistic portrayals of characters with daily changes in rutine depending on if it’s a good or bad day, and having their ups and downs – the really high highs and really low lows that can come with having a diagnosis or a disability.

I’m so glad that there’s more #ownvoices and accurate portrayals of disabilities out there. I already know I want to read more books with neurodiverse characters and there’s so many great disabled&neurodiverse bloggers out there recommending the accurate books. But diving into the world that is disabilities in literature has just felt too daunting and like I’m still not emotionally in a place where that seems healthy?? Like I still will get x10 times more hurt when someone wrecks writing that character than any other novel. Not to mention triggers, I can’t watch hospital scenes on the TV right now, whether it’s a broken arm or someone dying.

I’ve found listening to podcasts with real people telling about their real stories of dealing with disabilities, mental illnesses and pysical illnesses to be just the middle-ground I needed – SICKBOY Podcast is one I really really recommend whether you’re disabled/ill or not at all. The hosts are a trio of guys, one who has Cystic Fibrosis, where they interview a new sick person each episode in a really deep, but fun way with humor as well. Jordan Whelan talked about how it was to have ulcerative colitis, a similar gastrointestinal illness as myself, while being gay (ep. 108).

I want to end on the note that remember that queer disabled people face twice (in my community more than that) the harassment and discrimination as others, and I really think accessibility on queer events need to be given more awareness and thought. The first pride parade I attended this May I was proud to barely make it through as my lungs & feet were pretty fucked up, but after they had an accessible indoor event. Everyone deserves to celebrate their pride!

That said, read any book with disabled/neurodiverse characters that you loved?

Long Summer Days & Chronic Illness Trying to Ruin Them

I’ve just spent almost two weeks in a cabin on an island, without internet for the most part. Here’s what I learned: I miss the internet only when it’s cloudy and I am bored and need to occupy myself. Which was like two days, because it was thirthy degrees celcius outside and I am not used to this heat. There was only blue sky and blue calm water, nothing I had to remember or worry about. Lots of bathing, catching and then releasing butterflies with my cousin, seeing family I hadn’t in a long time and nostalgia of being reunited with my older brothers. They also lured me up on some mountain in just slippers before they also managed to get lost, but that gave me nostalgia too so I can’t really complain much.

A¬†couple days ago I also got my head back enough for the first time in over a month to start reading Oatbringer by Brandon Sanderson. When I read a hundred pages in one sitting the first time, at 2 am, I was ecstatic.¬†¬†I’m sure it sounds obvious, but I didn’t realize just how much morphine pain killers fucks with my head until I stopped them. I almost forgot baking lemon cake, fishing, driving boats at high speed and relaxing. It was a dream.

Here’s the recipe to the best glutenfree lemon cake I have ever made, before this post takes a darker turn.¬†

I hope this all sounds as lovely as it was, but then there’s the part where I just spent¬†almost two weeks in a cabin on an island because one night three days into my stay I could not breathe. *brief pause as I notice a spider on my leg and kill it with my hands, I want credit for that*¬†Anyway, I woke up and noticed something was wrong, an hour later I could not breathe, the tightness in my chest didn’t stop. I was just hospitalized for a lung infection and gallbladder surgery, not to forget I had misplaced my glasses, so I took a weird choice – woke up no one and wandered out of the cabin to get some fresh air. With the phone camera in front of me I then saw the shrubs move and a badger walk out, a distance away from me. I’ve met these badgers before, they are very cute and will also bite your leg until it hears a crack, so I ran for my life. Which looks more like walking slowly, hunched over, when you already can’t breathe.

So the day after I spent eight hours in emergency rooms and then three awful days in the third hospital of the month. The first hospital visit had been a ten days stay on the other side of the country, where I live, the second one for my minor gallbladder surgery I had just days before. This third hospital I had been to before, but I was nowhere near prepared for how awful it would be. I was in less pain than before. The people I shared room with however were very sick, and looking back there’s no way they got enough pain treatment.

One old lady barely stopped crying the twentyfour hours I was with her, both in pain and because she didn’t know where she was. She kept asking me to help her, confusing me with a nurse because of my young age and I couldn’t get up from my bed. That was the first time I lost it completely and broke down crying. Another lady was just bones, she got worse until the final morning she was swatting the nurses hands away, begging and yelling for them to let her just die, why couldn’t they let her just die. The nurses were nice to me, but acted like this was okay. Maybe it was normal to them, but in no way was that okay. Having been stuck unmoving in another hospital bed weeks earlier, waking up crying from pain that lasted hours, even with morphine, something in me could relate too much. I felt so bad for them, and there was nothing I could do. And also at this point, my situation wasn’t getting better either. So I broke down for a second time. I did not stop crying for hours until I had gotten out of that hospital, feeling mentally much worse than when I arrived. They hopefully got rid of my infection though. Don’t think it was worth it.

I also had to go back for a colonoscopy¬† (google it), where you have to take laxatives which was a minor nightmare as they didn’t work properly. No inflammation in my intestines this time, which means my ulcerative colitis isn’t flaring on top of everything else so that’s some good luck.

I don’t know if one should focus on the good or the bad. On the fact that I still barely can’t walk some evenings because the hospitals never had time or resources to figure out why my joints are swelling, or that I cannot laugh without wheezing in pain. At least I notice very much how often I have laughed these days. But last week I could finally be in the ocean without my body hurting, two days later I could submerge myself in water completely without lungs burning, a day later I could swim! It sucks to be in pain, to so much need a break from illness and having to fight to only halfway get there. This last year, I could probably sit down and count the times I’ve cried. Until now, because I don’t seem to be done no matter how many lovely days I fight to put between me and those hospital stays.

I’ll be back with book reviews soon, I’m so excited to be reading again.

Also I can’t leave my books at my dad’s house, they won’t survive long without rain damage –

Hospitalization & Collecting Books and Never Getting a Chance To Read Them | Bookhaul #1

Hi again! There is this thing I really struggle to write about, for many reasons. And then I always wonder, do anyone care to read it anyway? But I am also on painkillers and bored so here we go-

I am chronically ill, and sometimes it really defines what I am able to do. For instance I dropped one grade in all my classes because I got worse towards the end of the year, The moment exam season finished I got really sick, and turns out I had a lung infection. And then we realized my gallbladder bile duct was enlarged and today I had surgery to fix it. I’m terrified of hospitals yet I have been in one for two weeks, before I got to fly to the biggest hospital in the country for the surgery thing today.

Pain is extremely difficult to describe, and I am not in a condition to make a good attempt at it right now. But I want to share that I’ve had three different mothers tell me gall stones are way worse than giving birth – “I have three kids and I would rather give birth to them again, all in a row”. So while it’s not certain I have gallstones, it’s been a lot of pain. Which is why I haven’t been able to read.

Which bring me back to the books- This is going to be a weird post. I had been looking forward to reading these books for months, I just had to get through exams and end of schoolyear. Now I am looking forward to reading them on a beach somewhere if I ever get out of this hospital.

Physical books

The Lake House by Kate Morton 

The Complete Poetry by Edgar Allan Poe

Sapiens: A Brief History of Humankind by Yuval Noah Harari

The Waste Land and Other Poems by T.S. Eliot

Six Easy Pieces by Richard Feynman

Women in Science by Rachel Ignotofsky

Wuthering Heights by Emily Bronte (I have to admit I bought it only because of the cover, I mean look at it)

Ebooks

Arcanum Unbounded: The Cosmere Collection by Brandon Sanderson includes a lot of short stories and novellas from the Cosmere universe like Edgedancer, which I read before starting Oatbringer.

Notes from Underground by Fyodor Dostoyevsky was bought because it was cheap.

The Art of War by Sun Tzu was also cheap, oops.

Books from NetGalley

The Future by Neil Hilborn, a poet I’ve followed for a while, but never read his collections.

Foundryside¬†by¬†Robert Jackson Bennett, a well-received fantasy, with “industrialized magic” and thieves.

The Plastic Magician by Charlie N. Holmberg, magic and a lovely cover.

The Unbinding of Mary Reade by Miriam McNamara, with pirates!

Quote of the Week #4

It’s time for the quote of the week! It feels like cheating to use a quote I’ve definitely posted here in a whole review before. And I don’t know if I should do this on this nice & lighthearted blog, but I want to talk a bit about anger. These quotes of the week are getting darker and darker, all because of Holly Black. Not at all, but I’ve had periods where I’ve been very angry. Basically I’m angry all the time, in varying degrees. Mostly I’m angry at my own body, for not working properly #chronicillnessproblems. Like you got to be able to be angry at yourself for not being able to walk all of a sudden one day, and that’s me this whole week.

*This blog post is brought to you by another heavy week of trying to find out if I have arthritis or another connective tissue disorder, you are warned*

Also, I was at the hospital two times this week and they had made an (half-hearted possibly) initiative for patients and their families to write notes with “things they considered important at the hospital” to better it. I wrote two of my own, and hanging mine up I noticed so many of the others also saying “to be listened to” that I got angry right there.¬†

This is a good point to say that I am in real life a calm and collected person, if a bit introverted. I am nineteen years old and really aware of how I interact with people and trying not to bring so much negativity and anger into that.¬†Anger isn’t good, but it does get you to act and think (in that order), it’s better than absoloutly nothing which too often seem to be the alternative. In the quote the main character soon walks out and makes choices that leads to a lot of deaths, so I want to distance myself from that thoughtprocess. But I’ve definitely been there with “fuck consequences, I am done caring about how you see me right now”.

I really relate to people not realizing how angry I am, which is good most of the time. Until I am angry in a doctors office and they continue to talk down to me. When I get angry I get tears in my eyes from holding it all back, like all muscles are tense from not running or yelling and I am literally crying. Confuses a lot of adults, my whole life. Where were I going with this? Sometimes you have to be careful who the anger gets released at, maybe this doctor isn’t the doctor/person that deserves it. I think here’s where the “give up on regrets” comes in. I rarely let my anger out at people randomly, but the few times it happens I’ve wondered how I was able to get back from being in that state of pure fury. I am not sure I was able to before I had some kind of closure with the problem behind it. Maybe that’s why I am angry now, I let myself be angry at things I cannot change or figure out right now.

In the end, anger is what has gotten me places the fastest, which I find disheartening. As a nineteen year old I can come with as fitting arguments as I please, but if a mind is made up, I am usually too easy to brush off with no consequences to that person. And when it’s in a doctors office, it’s even worse, because it will have detrimental effects to me and I know it. I’m good at arguing, in debates at school and outside, because I’ve had to since being a sick kid in doctors and teacher offices, always with a lot on the line. And if you care enough, at some point anger seems to be expected. I hope not, because I find it sad and the recipe for turning people bitter, but I’ve seen people yelling getting so much further than playing nice. At the same time I am in too many of these hospital offices each month to lose it at every one and still stay sane.

Why do people react to anger so weirdly? I guess it makes sense that you don’t want to see a person sad, but you definitely don’t want them angry because then it might have consequences for them. So then things get solved. I have a love hate relationship with that quiet anger that can be a driving force behind things, and I think I will continue to have it for a while.

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My Favourite Podcasts: Space, robots, chronic illness

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Here’s the general, two-dudes-talking type of podcasts I like. Here’s a list of book podcasts. And finally, here’s a list of science and productivity podcasts. Yes, there’s a lot of podcasts.

 

Hackable?

  • Find out just how easy it is to be hacked and how it’s done. Usually faturing a hacker scene from a popular movie or tv series to debunk how close or far from reality they are.

 

Sickboy

  • Hosts are Brian Stever, Jeremie Saunders and Taylor Macgillivary. Jeremie has cystic fibrosis.
  • Chronic illness and humor combined, the three guys interviews people with all kinds of illnesses and injuries.¬†The people, both hosts and interviewees, are really what makes this podcast hearthwarming, educational and often very funny. They’ve shown that even the episodes with deadly illnesses can have humour, without taking away from communicating the gravity of the people’s struggles and trouble. I’m chronically ill, mainly with crohn’s and a lung problem, and this is what I’ve been looking for without completely knowing so. Illness is tough, and talking about it means it gets heavy at times, but I think all people should know a bit more about diseases and in which ways it affects people’s lives.
  • All episodes features fascinating people and I’m nowhere near having listened to them all. I would definitely recommend checking out the 1st episode about Jeremie’s cystic fibrosis, nr. 9 with ptsd, nr. 112 with multiple sclerosis (ms), nr 107 with zika virus and nr 75 with juvenile rheumatoroid arthritis. But they’re all pretty great.

Liftoff

  • Space news and history (that part I skip) that you don’t have to be a rocket-scientist to understand. Very calming voices, so at the very least it’s good to fall asleep to, but I’m pretty into space and find it exciting.

My Favourite Murder

  • I’ve listened to a few murder podcasts out there, this is the definite winner and the only one I still follow. Every once in a while something different, like a cult story, is thrown into the mix.
  • Hosted by two lovely ladies, who needs all the credit for the amazing woman-empowering perspectives they give,¬†Karen Kilgariff and Georgia Hardstark.

Nancy

  • Stories and conversations about queer experiences¬†today. Contains episodes that made me both laugh and cry. Talks about lgbt issues with interviews and history.

Roboism

  • Savannah Million and Alex Cox from Do By Friday/Cards Against Humanity team
  • Talks about robots! All the new, weird robots!