sapphic books, easter & friendship | Bi-Weekly Update

New book posts:

Other books I’ve been reading:

  • Some of Us Did Not Die by June Jordan (essays; feminism, race, queer)
  • The Essential Rumi
  • The End of Everything by Katie Mack
  • Cemetery Boys by Aiden Thomas

Added to TBR:

Many of the sapphic books are from Naty’s Bookshelf’s post of recommendations! Also Spines that Shine wrote a fantastic review of Fable by Adrienne Young, which made me want to read it.

  • Permafrost by Eva Baltasar (lesbian protagonist, set in Barcelona)
  • They Never Learn by Layne Fargo (thriller/mystery, murder, bi women protagonists, femme fatale, dark academia)
  • Lumberjanes vol. 1 by Stevenson, Ellis, Watters, Allen (graphic novel, queer women)
  • How to Find a Higgs Boson and Other Big Mysteries in the World of the Very Small by Ivo van Vulpen (science, physics)
  • Fable by Adrienne Young (YA fantasy, pirates); I’m nervous about this one as I didn’t match well with another novel by the author, but it’s interesting concept of pirate-vibes (well sea merchants) and danger has lured me in once again.
  • City of Betrayal (City of Spires #2) by Claudie Arseneault (high fantasy, lgbt; big queer cast and aro-ace mc, politics)
  • Baker Thief also by Claudie Arseneault (urban fantasy, lgbt; among others are aromantic, biromantic, demisexual & nonbinary characters, witches, thieves, enemies-to-lovers)
  • A Master of Djinn by P. Djèlí Clark & the other prequels (steampunk fantasy/sci-fi, set in Cairo, thieves, lgbt; f/f relationship)

Three things on my mind:

  • I’m just finished with what I named the Easter studying-drinking bootcamp. Weird name since I have had to be sober for most of it (my new meds wasn’t to happy about me drinking probably nor my very much currently active chronic illness). I’ve tried to explain it and this is what I’ve come up with;
  • We’re three roommates (out of the usual fifteen) and one additional friend having chosen to stay in our university city over easter vacation. Because of covid, but also we all have a lot of school work to catch up on. First one because he’s an engineer too busy making super-awesome-dangerous drones, second one because he takes too many high-level math courses and me because my chronic ill ass (crohn’s mainly) decided to throw a tantrum and become really sick this semester (not yet on the other side of this, which complicates things). Drinking is optional. Making a bunny sculpture as a friend to our ethically-sourced-from-dumpster taxidermy fox is not, as this is the project we chose to make the week a bit more interesting. That is as much as we’ve got planned, we’re just as confused as the people we’ve tried to explain it to.

  • I’m in so much pain sometimes and I both adore the people around me right now and the awkward support they give as best they can. But also I’ve been conditioned since I was a kid to never trust anyone to not let me down when it comes to chronic illness and it’s so difficult to let people close to me right now, as I do have a lot of solo coping mechanisms that require a lot of effort, energy and focus directed at myself. For the first time in forever I do have some energy though, and can only hope for the best and try to prepare for anything else.
  • I wish I could discuss with other chronically ill people how bad it feels in the scenario where people want to help, but truly deep down don’t get it. Because it’s the gray area of them trying and you wanting to encourage that, but it ending up with the equivalent of holding someone’s hand and guiding them through a tunnel, pointing out all the things they need to know to even begin that process. And they’re not bound to remember, and nowhere near change, after one walk through it. It just makes sense that they’ve not put in the work that you’ve been forced to. Personally, I’ve both been the sick one and the relative/friend to the sick one, it’s two very different experiences, but still I’ve had to do the work twice at the minimum. Even the smaller things are so interconnected to basically relearning how to view illness both in the view of a person and the ableism in society, it seems impossible to just get people to stop doing them as they don’t understand why and don’t just accept/remember the request.
  • For example, if you hear even the smaller things like «I hope you get better soon» constantly from people close to you – it’s really draining. Because you sigh inwards and make the choice to explain how it’s not bound to happen magically like that – maybe even the doctor has given you numbers to attach to a time-frame – making sure to assure the loved one you understand they mean well. But still it’s just as if you’re arguing against their well wishes and then the comments of being too pessimistic hit you like pellets, you counter with how you´re objectively realisticthere’s even numbers this time backing you up, not the usual «it´s my body and I’ve been in this situation before». And then you know there’s need for another talk about forced (!toxic tbh!) optimism and how it might help for right now, but it will crush anyone’s soul in the long run, but you’ve had that talk before with this person. Maybe even the day before. You’ve already spent too much energy on this. You leave it be, even if these parts of the conversation constantly drains you just a bit more as you bite the social bullet again and again. There’s certain people I want to talk less to these days, even if I care for them very much.

  • After those two very different thoughts & vibes, I hope you had a great easter. And if you wasn’t able to relax, or you dealt with too much family or felt lonely and missed seeing them bc of covid – that’s all very understandable as well and I hope it better weeks are ahead.

merry christmas & all that | Bi-Weekly Update

New book posts:

NOne. I took somewhat of an unexpected vacation.

Other books I’ve been reading:

  • I bought and started to read The Myth of Sisyphus by Albert Camus until I realized I was truly not in the right head-space to read about the philosophy behind taking your own life right before Christmas, which I think is fair.
  • Sweetdark by Savannah Brown!!! It’s so good!!! If you’re looking for a poetry collection, this is it. Review will be out sometime soon.
  • I might have read the whole, very popular hp marauders fanfic All The Young Dudes by MsKingBean89 and then added it as a book to my goodreads because it’s … 520k words. It is breath-takingly amazing, the writing only gets better as the years pass for the marauders. Remus and Sirius are both queer, but not in a forced way. Everything in the story just makes sense and gives hp fans everything they deserve, I am just late to the party here. All praise to MsKingBean89, must you have a wonderful christmas and a wonderful life. Someone yell it from the sky at me if they publishes writing of their own.
  • I read Foundryside by Robert Jackson Bennett the night I was awake before my train home for christmas, then the whole train-ride home. It was amazing fantasy.

Added to TBR:

  • Shorefall (The Founders Trilogy #2) by Robert Jackson Bennett (fantasy, lgbt; f/f romance, found-family trope, heist book). The first book of the series Foundryside was not perfect, but it was really good.
  • What If? Serious Scientific Answers to Absurd Hypothetical Questions by Randall Munroe (nonfiction; science, physics, illustrated). Made by the same author as the great & nerdy webcomic xkcd, also a former physicist and NASA robotics employee, so this book got to be good.

Three things on my mind:

  • I have never needed a good amount of time to not do anything, with nearly-free-conscience, this much before. Exams went to hell, not because I did bad, but because I didn’t do them at all. (You can’t fail me if I do not participate and all that). It’s very on-brand in that I have a tendency to do something completely or not at all, which is the mind-set I truly had pre-university. Abandoned it at uni this far for a reason. Sometimes things start out as irony and develop into a part of yourself, as with that one. Anyway, exams failed because of bad health and chronic illness flare-up. Surprisingly, when you go home from the hospital after doctors haven’t found out what the fuck is wrong with you this time, you can’t suddenly expect to get better the next day, or week, or month? I really pushed myself through all those medical things (and there were many), went home to my mom for a break, failed to study for exams, failed to go back to my university city at scheduled time because I was feeling too unwell for the train-ride. Then finally got back to the city a week later, failed to study even more and then did more medical things while being on the brink of exhaustion. That last medical procedure felt like torture, just because my body was so done with it all, while it might be the easiest of them all overall. In many ways, I did get the whole exam period stress and then the relief-from-completion experience, only with a lot more shittier steps to it. 2/10 won’t recommend, with the plus point for having been worse before.
  • I bought myself a couple jewellery items as a gift from my mom this christmas, which is very rare for me, but I got so excited over them and have been for months. We were all feeling bad because of getting to the christmas shopping too late in the middle of this chaos and no one really knew what to do. Ended up with getting her more gifts than usual in fear of nothing making it before christmas, my favorite of them all being the very useful hairbrush, but with Frozen Elsa motive because what else do they sell online here? Nothing else, I can assure you. (When Amazon rarely/expensively sends to your country). As I write this, I haven’t gotten the jewellery yet but loooook –

IT’S THE DAGGER EAR THING OF MY DREAMS. I might just go ahead and use the rest of my gifted money on actually getting piercings this new year, when corona hopefully sometimes calms down, that would be cool.

  • I should have said this already, but I hope you are having as good of a christmas or holiday season as you can! I am so sorry if your area is hit badly with COVID-19 right now. As someone who is in the risk group; I am so deeply tired, I understand and I feel so much sympathy. From the tone of this post, it might not be a surprise to find out my christmas has been rocky. Here’s some of my things I’m really grateful for this season, that I do not take for granted; I am with my mom & brother, who means the world to me. I am on a never-ending quest to text the people I care about, who I might not have stayed in touch with as much this past year, and wish them well. Photos of people getting the corona vaccine are making me happy every time I see them. My 17 year old brother have not out-grown or gotten too embarrassed to dance to old Nicki Minaj songs on Just Dance on our very old, but newly found Wii console. I have to learn how to make christmas dinner, because we do not have access to our family of chefs this year, even though they’re literally across the street. I am grateful that no one of the affected by COVID that is close to me have been at particular at risk or hit hard by it.

Soooo merry christmas, happy holidays and let’s all stay safe, also over new years?

being sick, friendship & empathy | existential thoughts


What truly is burning a hole in my soul right now is that, as students, people were so shocked and heartwarming about me having been admitted to the hospital. But in real life I’m so much expected to take care of myself without help, especially as everyone is busier with exam season close by, and it’s truly hard to keep up this semester with making food for myself, let alone study enough.

It’s not my fellow students’ fault – chronic illness is something truly difficult to understand how affects a person (and how much it varies) unless you’ve seen it up close, but I’ve found the STEM (mainly physics) crowd I spend most time with have few people that truly understand. I’m used to that, but it also tears at me, because I have to stop mirroring the people I’m surrounded with and realize I’m at a disadvantage. It does not mean I can never aspire to my ambitions, I do study physics for fuck’s sake, but that certain things will be different; more difficult for the most part.

Disabled is a term it took me a long time to be comfortable with using about myself for various reasons. Now I have to make the people around me comfortable with it as well, because even the ones who mean well have not yet faced the fact that I won’t become – and then stay (which is the most difficult part) – not sick. How energetic I am will constantly change, how much I can participate in parties or movie nights, or anything in between, will change. I can work on not instantly becoming social anxious when I’m more ill, because suddenly I can’t read the whole room like I usually can and I know I miss more social cues – these are examples of things I’ve realized overwhelmes me only recently.

The hardest parts of being chronically ill for me hasn’t been the pain, although that is a major problem when it truly gets bad; it has been to get people – doctors, friends, former friends, family, teachers, school administrators – to understand. Although I’ve lost a lot being chronically ill since I was a child, I’ve also gained qualities, among them a high level of empathy. It makes sense; it has been cruicial to my survival in a particular way, as well as something I’ve been raised to be very aware of. But I think going forward I’m going to have to mold what empathy means to me and kind of extract the parts of it that hinders me from asking people for something if I think they’re going to reject me. At this point I would rather go through that painful process and hopefully end up with a core group I know that care, even if I’m not in shape to go to a certain party with them. Or worse – somehow see me studying less or being awake at strange times, and directly connects it to laziness and me not being up for this. Whatever this is.

I’ve seen the signs of that happening recently with a truly close friend – I’ve gone through that type of friend-breakup before after all – along with some comments I’ve been getting from them. And I got so frustrated until I realized more than anything we’re in an university enviroment where you’re constantly afraid people will suddenly just leave. We as a student body are dependent for each other for more than we realize in our daily life, especially during covid-times, where we have nowhere else to turn to to fill our days (hopefully with some work), get us out of bed on a schedule or cheer us up.

Or discuss big philosophical ideas with, while hating on the one obligatory philosophy course we have, of course. In the end, my core friendgroup is weird, not in the way of ~we’re so quirky~, but in the way of “we’re STEM students all with different degrees of lack of social abilities, we joke about that constantly, but it’s true and sometimes the areas we lack makes people more hurt than intended in certain situations”. Sometimes it makes it impossible to see that you’ve hurt someone, or is making it more difficult for them. I think another change I will have to do is be conscious of telling them when it happens, softly of course*. Because I do believe they don’t dislike me as a person, even if I’ve gotten the reputation of being a bit chaotic and not as smart recently. And for the last one, at least, I know I can prove them wrong, if only my health would pick up the pace getting better.

I’ll continue looking elsewhere for support when it comes to my chronic illness. I think the temporary conclusion I’ve come to is that I’ve always found myself having friends for different purposes; I do different things with them and have a different level of openness/vulnerability. And that a person doesn’t have to understand what I’m going through as long as they show that they do care, even in their mistakes. It’s a strange space to be in right now; I both do not have the energy to deal with it, and it has risen as a bigger issue because of that.


The next day

I’m wary about sharing anything too personal on the internet, so I’m nervous about this one. But I want to add that I went from writing this post as a very much uninterrupted stream of consciousness to walking out into my living room and seeing the people I live with and three additional friends, who’d just gotten here from a chill night drinking someplace else. And they cheered for me being “alive!” and home. And then threw a whole lot of questions at me, which included how I’d forgotten to tell one of the people I live with & talk to mostly every day about being in the hospital at all, which I mentioned in this bi-weekly update (my excuse is that I was truly drugged on painkillers).

After some hopefully-faux hurt souls, we were back to a strange place, but a more comfortable one than we had been for a long while. I didn’t feel like such an outsider, they could at least recognize something big had happened and that I was not that okay. That it wasn’t me that had voluntarily distanced myself from them, but shit had hit the fan health-wise and led to this.

And then as the evening progressed and we watched a movie, these obviously drunk people of mine continued to make fun of each other, and me, with some very poignant hospital/health jokes, which I laughed at genuinely because they were clever ones. But they did always add a concerned look, a comment that they were glad I was there and rounding the night of with a genuine discussion of “how bad/okay are you right now?” If anything it only reinforced the existing ideas I had about this whole situation the last months; they mean well, but sometime lack the ability to communicate it or are too hung up in their own things/views. But they also have generated this environment which has truly become home for me and for that I will work with all of it. ❤


Notes

* Or maybe not so softly. I might’ve already started this new strategy of mine off; it was the second time the same person commented on how I shouldn’t have kids because of my chronic illnesses and my reply might’ve been a longer version of “I understand what you mean because I know you, and you know I don’t currently want kids, but what you’re arguing for is pure eugenics.” They took it well, I will give them that.

For those wondering my diagnoses (so far) is the autoimmune illness Crohn’s disease, the gallbladder disorder Sphincter of Oddi dysfunction and a lung condition.

hospital stay & new tbr books | Bi-Weekly Update

New book posts:

Other books I’ve been reading:

  • The Body Keeps the Score by Bessel A. van der Kolk (non-fiction, metal health)
  • When I Arrived at the Castle by Emily Carroll (queer graphic novel)
  • A great, short book in norwegian about magic/shamans in sami culture and especially the “witch trials” in the north of Norway. It’s strange the darker parts we learn of other countries’ history in school, but not so much our own.
  • Trail of Lightning by Rebecca Roanhorse (urban fantasy, post-apocalyptic, author is familiar with Navajo culture through her husband & the protagonist is Navajo)

Added to TBR:

  • Beneath the Dead Oak Tree by Emily Carroll because I read & liked her other graphic novels “When I Arrived at the Castle” and “Through the Woods”
  • Peace Breaks Out by John Knowles because I read & liked Knowles’ other, much more well-known novel “A Separate Peace” and both are set at the same boarding school, so I expect all of the classic & dark academia vibes, maybe even more homosexual undertones. I’m going to enjoy writing my queer take of a review on A Separate Peace, because although the author has denied it, there’s some definite “I’m in love with my bestfriend” moments there. As I mentioned on tumblr as I read this book in one night; “I’m 47 pages in, and had to google it to make sure since the main character is once again remarking on very specific things, like how much this athletic boy’s skin radiates, like you know – boys being boys often do ??”
  • The Magus by John Fowles (classics, mystery) because why not. And the intriguing promise of “a young Englishman who accepts a teaching position on a remote Greek island, where he befriends a local millionaire. The friendship soon evolves into a deadly game, in which reality and fantasy are deliberately manipulated, and Nicholas finds that he must fight not only for his sanity but for his very survival.”
  • Red Dragon (Hannibal Lecter) by Thomas Harris (horror, psychological thriller) – yeah, two weeks ago I wondered whether “rewatching two seasons of Hannibal in two days are not what you should do when you’ve been sick” before having to reconnect with society and actual people. I did survive going into society, if barely – like truly, corona made its upswing again where I lived just as I stepped my foot out that door. But now that I’m stuck with myself again, why not read Hannibal as well.
  • The 7½ Deaths of Evelyn Hardcastle by Stuart Turton is a mystery/thriller I’m sceptical if I’m going to like, I’ve seen reviews that leads me to believe it’s a very hit or miss type of book. But many of them describe it as ‘devilish’ because everyone is unreliable, which I see as a positive and what I’m looking for right now.
  • A Wizard of Earthsea by Ursula Le Guin because I always say I need to read more of her work, which are classics of the fantasy/science fiction genre, but I never seem to get around to it.
  • Gideon the Ninth by Tamsyn Muir (fantasy) because while it was released last year, it’s gotten so many good reviews (goodreads average 4.20!!!) and I’m definitely here for the queer necromancers.
  • A Winter’s Promise by Christelle Dabos (YA fantasy, dark academia), recommended to me by a friend.

Posts I’ve loved by other bloggers:

I started reading through more blog posts from others again prior to the hospital visit, but it did give me time to spend and I found some enjoyment through posts like these –

  • ONLINE BOOKSHOPS TO SHOP AT INSTEAD OF AMAZON: BREAKING UP WITH AMAZON (PART I) by arub unwritten: I rarely buy books now and they’re mostly from norwegian bookstores. But I have also automatically bough books from bookdepository for the convenience, before I started to feel bad about that. Then I found this post which gives a pretty neat introduction, especially to other stores to look into. And it includes which places the stores ship too! Should be a requirement, jeez. Hive was pretty empty (for me at least) considering the corona-struggle of shipment, but I’ll definitely check in with them in the future again.
  • Ink-Stained Forest’s Literature Journey where they talk about exactly that, but it was a familiar & beautifully written type of journey, an example of what place and function literature can have in your life, and how it can vary over time. It also made me want to sit down and truly look at if I also have these almost episodic changes to what type of book or genre I read and the function that fills. Even if I switch between reading both for reflection and enjoyment, without always going into a book knowing which one I’ll most likely get more of.
  • Fall Reads by your reading needs by forgot second breakfast (which is a unique & impressive name): a good, short list of fall reads that gives you spooky, adventure, athmosphere & romance and reminds me I want to get to Gideon the Ninth soon.
  • Mathematical science fiction books from Book Riot: I’ve been looking for lists like these for so long! I cannot tell you accurately enough the struggle to find these types of books (or fantasy), then separate the bad mathematics from the badly promoted mathematics, but the part it plays in the book is good enough. I’m not talking about brilliant even, just good enough!! I can vouch for Zero Sum Game being good (I haven’t sat down researching all the math topics mentioned, but it seems legit and has a fun kind-of-supernatural part), although you might have different problems with that one if you’re not ready for a lot of bloodshed and morally gray characters.
  • Favorite Villains by Mary Drover: I’ve been too into villains this autumn and here was a few new ones I’ve yet to put on the never-ending TBR list of them, hahha.

Three things on my mind:

  • I had to start this week off by going to the emergency room at 5 am for major stomach pain, then I was at the hospital for five days. I’ve just been released, but they did not find out what happened even with a lot of tests. So I’ve yet to eat proper food without throwing up, meaning I was let go with a “come back if you don’t get better”. I have crohn’s disease already, which can affect your entire intestine, as well as a gallbladder diagnosis, and lung trouble that we don’t yet know the cause of – so it could be basically anything is what I’m saying. I wrote a mini-post about it just now, surprisingly it’s very reflective on illness, empathy & friendship. If there’s something I’ve done this week it’s spending a lot of time thinking, staring out into nothing. And while very original thoughts doesn’t appear right then, I’ve found it does start up this process and suddenly you find yourself with new insights, ideas and opinions.
  • An extremely specific hospital-college crossover pro-tip; if going to the hospital for closer to a week, send a message to the people you live with or, if you’re like me and extremely drugged on pain killers & pain, have one of them message the others explaining the situation. Because if not you end up with my scenario where one of the people you talk most to just happens to have a strange week where he doesn’t see the others that much and suddenly it’s been three days and he’s like “where are you?” and oops, you realize the mistake. It’s already a funny mistake, but jeez, I feel bad for both of us in this scenario… It took three whole days!
  • My friend & roommate is reading Harry Potter for the first time and discovering book fandoms. Mainly draco tiktok, which my slytherin self had to realize how many good content creators was behind it. So she is talking about wanting to write fanfics. I have to admit I’ve never written fanfiction, but I don’t know how to tell her I genuinely put a lot of effort into writing through high school. I sent the message “what do you think the chance is that I’ve ever written 50k words on a project?” and got “you? never” instantly in reply. For reference my WIP is about four times that (and needs to be cut down considerably to be useful for anything). Mostly because, looking back, you can truly see the quality of my writing progress through which parts are written first and years later, because I write weird (that’s for another time). But oh, how much this made me rethink how much of a book-nerd I seem in real life; even with the amount of books I own, apparently not a big enough one. We’re mostly all nerds here at my uni, but I am truly a book nerd as well and it’s going to be a more difficult time proving it than I thought.

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 🌈

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!