Reading: Reverie by Ryan La Sala
To see all the books I read recently, click here.
Writing: #SnowQueenStory, on page 54
Editing: my blog archives and a book description
Watching: The Half of It on Netflix
Playing: Hogwarts Mystery, in year 1 on a brand new save file because I decided to delete my Facebook
Listening: to various songs on Spotify
Earworming: the main theme from Us
Bookmarking: some websites about flower language
Wearing: a navy tank top dress and black shrug with white pearl earrings
Eating: too many Chips Ahoy
Smelling: almond sugar lip balm
Hearing: my youngest brother thundering around
I don't recall having much trouble with time management in my life before now. (Keep in mind that my chronic illnesses have wiped a lot of my memory, so that's worth taking with a bit of salt.) However, since descending into severe chronic illness and then a little ways out again, I've been struggling. It's kind of funny because my chronic fatigue means I'm much more limited by my energy than by time, unlike most people, but of course, any change in life means adjustments to how you manage time.
When I became extremely ill in 2016, I was so low on energy that I couldn't do much with my time besides sleep, watch Netflix, and scroll through social media. (I also did read books and do a little writing, both in a lower amount than before.) By the time I started improving, I was almost running out of movies/TV to watch, which is not a common complaint. I was also very thoroughly entrenched in social media. I've always loved it, after all, ever since I first illicitly joined Facebook in high school. I love being able to interact with others through writing, which comes more naturally to me than in-person interactions, and I love learning from and enjoying content from people all over the world. Social media is perfect for someone like me, and with my disabilities, it's become most of my social life as well. It's proven to be pretty effective at keeping me from feeling lonely or isolated.
However, as my illnesses have improved, making it possible for me to spend more time on editing and writing and the like, social media in particular has become an issue. Most people aren't active on six different social media websites--with two profiles on one of them and three on another. I've been loathe to let go of my beloved social media, with how much I enjoy it, but time management, like life with chronic illness, is all about prioritizing. Social media is a priority for me, and a pretty low-energy one at that. But keeping up with my reading is an even higher priority, and I've been struggling there (well, struggling for me). Church, writing, and editing are also higher priorities for me than social media.
Welcome to 2020! Today marks not only the beginning of a new year but also the beginning of a new decade. I started this blog in mid-2012, which doesn't quite bring us to a decade ago, but there's still a lot of content here to explore if you'd like to review. A good place to start is with my past resolutions!
New Year's Resolutions
January Humor and New Year's Resolutions
Top Ten Tuesday: New Year's Resolutions
New Year's Resolutions 2017
New Year's Resolutions 2018
New Year's Resolutions 2019
For me, this decade was largely marked by illness, with 2010 being the year that I first started seeking help for my developing fibromyalgia. According to my journals, I started showing possible signs of interstitial cystitis as early as 2013, with chronic fatigue syndrome and postural orthostatic tachycardia syndrome possibly making their appearances around 2015. In mid-2016, I became ill enough that I could no longer perform substantial gainful activity, which continues today, although I saw a great deal of improvement after visiting Mayo Clinic in 2017. It's been an adventure, that's for sure!
âââNow we've got the Roaring 20s ahead of us.
I'm always shocked, somehow, when the weekend arrives! It feels like this year has been moving so quickly. Perhaps that's just what happens when you're chronically ill and have a simple life spent mostly at home. 😋
Today, I want to talk about an epiphany I had when I was writing this blog post. In the post, I wrote about trunking #ProphecyStory and the bright possibilities I saw moving forward in my writing career. As I did so, I suddenly realized why it's taking me so long to write something good enough to get a literary agent.
A little while back, I wrote a different blog post about how my books have lacked the originality necessary to succeed on the market. At that point, though there are reasons why I'm glad my career hasn't taken off yet, I was feeling fairly discouraged. I kept thinking, How can I be such a slow learner in my writing career when I've always been a fast learner in everything else? But now I understand that it's not an issue of being a slow learner. I've likely been learning and improving at a decent enough pace.
The problem is that I wasn't writing in the way that works best for me.
I've known for a long time that, when it comes to writing advice, the cardinal rule is that you need to do what works for you. Not every piece of writing advice will be right for every writer, though most advice has its place. What I didn't realize was that this doesn't always come naturally. You have to put in effort to find the way that works for you, and it won't always be the first way you try. You have to test it. You have to apply those pieces of writing advice and see if they improve your work.
As a disabled rights supporter who follows many activists, I sometimes see posts online talking about "inspiration porn" and how it's ableist. For a long time, I didn't totally understand why. But I do now, and I thought it would be a good idea to talk about it here on my blog. So let's get into it!
What is inspiration porn?
Inspiration porn exploits disabled people and their accomplishments in order to inspire abled people. Though it may seem harmless at first, these articles, images, and posts contribute to the distorted vision of disability that we have in our society.
Why is inspiration porn ableist?
There are a few different reasons why inspiration porn is damaging to disabled people.
First, it focuses on a person's disability to an extent and in a way that is dehumanizing. While disabilities are a real part of life and can have a significant impact, it's important to always remember the human living with the disability. Instead of constantly focusing on what makes them different, talk about the things that make them relatable!
Second, inspiration porn ignores the fact that disabled people are always achieving amazing things, just like abled people. We aren't as incapable or as unusual as society often thinks. We have our own interests and dreams and ambitions, and we're out there making things work every day.
Third, the central message of inspiration porn is that "if this disabled person can do it, anyone can do it." This sets up a weird conflict between abled and disabled people where abled people are always supposed to be better and more achieving than us disabled people. If they aren't, that means they're failing. How messed up is that?
Today, I have a few updates to share, so I'm going to devote a post to them!
First, an update to My Writing Career So Far. When I wrote that post, I was planning to stop writing #SnowQueenStory, as I didn't feel like I was in the right frame of mind for the story, and start editing #ProphecyStory instead--once I finished the latest edit of #OCDStory. I had a lot of edit ideas for #ProphecyStory that had been building up over the years, and they were haunting me every time I tried to read an epic fantasy novel.
I'm still plodding along in my #OCDStory edit. I'm doing a close line edit, because the prose at the beginning is better than the prose in the rest of the book. It's actually pretty normal to be slow on this kind of edit, which makes me feel less frustrated, LOL! There are a few other things I'm adjusting to. So It'll be a while yet, but I am making progress towards being able to hand the story over to my next beta reader.
However, I realized this week that #ProphecyStory won't ever be what the market needs, no matter how many edits I pile onto it. Like all my past work, though it has plenty of heart, it's too tropey and unoriginal. The premise also relies on big-level conflict that I'm not really suited to--I'm trying nowadays to follow the advice of this Tumblr post because it's really good advice that I haven't been able to get out of my head.
So I'm left now with just #OCDStory, the first part of #SnowQueenStory, and a hoard of ideas.
It's time for me to share all the coolest stuff I saw on the internet this last quarter!
First of all, I wanted to share this fantastic language-related video where bilingual people take on Google Translate:
In the writing world, this Tumblr post gives some great advice for white people drawing/writing characters of color. This Tumblr post looks at fictional animal design, while this one looks at the causes of war. This one offers an interesting cheat sheet for how plot, character, and setting interact.
One of my pet peeves is an ableist microaggression that I've talked about before: offering unsolicited medical advice to chronically ill people, especially when you're not a medical professional. This is a problem for a few different reasons.
First, we chronically ill people have to be able to reach a place of acceptance. We have to face the fact that our lives have changed. We have to do our best to plan for a future where our illnesses continue to exist and may even worsen, as this is often the reality. We can't waste all our time and energy putting our lives on hold to search for a magical cure. (Unless we're also medical researchers.) When people are constantly throwing ideas at us for how to "fix" our chronic illnesses, it can be really hard to move on. I know that you're trying to offer us hope, to keep us from "giving up," but that's not how this works. That's not what we need. Acceptance is really the key.
Second, it assumes that we aren't already aware of the existing possibilities for treatments. It assumes that we don't know our own body, our own illnesses, that we don't have professionals we're working with on this, that if we just tried harder we could make this whole problem go away. And that's offensive and untrue. People with chronic illnesses tend to be quite familiar with the research, probably much more than you are. And the solutions you offer us? They're usually either things we've already tried or things that we're pretty darn sure are quackery. So give it a rest, all right?
Hey-o! Today I'm sharing with you a truly terrible comic that I made, depicting a metaphor that I often use for my fibromyalgia et al. (Hint: chronic pain is basically just a lot of noise.) Check it out, share it if you'd like, and I'll be back next week with my favorite people to follow on social media.
As my longtime readers know, I've aspired towards becoming a published novelist since I was young. I started trying to write my first novel when was nine, and I sent my first query letters when I was twelve. I had a goal to get traditionally published before middle school started... then before high school, then before college, then before my graduation from college. I was (and continue to be!) a huge supporter of teen writer initiatives. But none of these things turned out for me, and here I am, twenty-five years old, nineteen novels written, 117 query letters sent, and still unpublished.
My younger self would be horrified, and a small part of me is disappointed. However, there are reasons why I'm actually glad I haven't been published yet. It's not because I was too young--I stand by my support of teen authors, All authors have to start somewhere, and some are ready for publication sooner in their writing career (and in their lives) than others are. But I, as a writer and a person, was not ready for publication before. I don't know if I'm ready now, or when I will be, but there were at least three reasons why it wouldn't have worked in the past. I'm sharing them here to help other writers who might be facing the same issues and setbacks.
My name is Kira Brighton, and I am a carboholic.
I love sugar, love it, and when I had to go on a low-carb elimination diet for two weeks in spring of 2017 to figure out my IBS, I was miserable. Yes, thank you, I would like to never ever do that again, please. Sugar is a lot of what gets me through my days--because it's not easy, living in a body with lots of pain and little energy. Sugar makes me happy, in a way that few things do.
As such, it makes sense that, after I was diagnosed with IC and multiple food sensitivities and had to permanently start a very limited diet, I defaulted to carbs, carbs, and more carbs. Not only do carbs make me happy, but they are easy to find in prepared form--even when the list of ingredients that you can't eat is a mile wide. Seeing as I have no energy to spare and absolutely despise cooking (I have no idea how anyone can enjoy it), of course my diet focused at first on the easiest things I could still have: baked potatoes with cheese, pasta with cheese, and vanilla wafers.
As y'all might have noticed, Camp NaNoWriMo didn't work out so well for me this last month. In April, I wrote just a little over 8,000 words of my new #SnowQueenStory. For someone who used to be able to win NaNoWriMo (50,000 words) in two weeks or less, that's... really discouraging. But this is my reality, and reality can be harsh at times.
It's important that I recognize that this is my first attempt at writing a new, original novel since 2014. (I did write a novel-length fanfic that helped comfort and bolster me through the worst of things in 2016/2017. It took about a year to write.) This is my first attempt at a new, original novel after my chronic illness crisis. Expecting it to be easy, and expecting to be able to win NaNoWriMo right off the bat again, wasn't realistic of me.
I did face challenges that I couldn't have anticipated, c'est la vie for us all, right? For most of the month, my chronic illnesses were flaring due to acupuncture, which I'd decided to try out after like a million people recommended it to me--turns out it was not a good idea for me. I wasn't sure it would do anything at all, but I definitely didn't expect it to have such a strong negative effect!
I've always considered myself pretty knowledgeable when it comes to mental illness. Psychology, after all, is one of my main interests. However, my big project for my final class, a LibGuide for teens about mental health, taught me a lot I didn't know. Categorizations have changed a lot over time, and there were many conditions I came across that I hadn't heard of before. In fact, the amount of work I expected the project to take ended up at least tripled because I had to keep revising my organizational structure. Not only were there many changes in the official DSM structure in 2013, but there are a number of conditions that cross categories.
More than anything, the project made me consider how arbitrary human categories and labels can be, at least when it comes to health. It's something I've experienced in my own life, and it's something I could see in this project. It makes sense, of course. The mind and the body existed long before we gave them names, and the lines we like to draw, the boxes we create, don't exist in nature.
Language means a lot to me, as a writer and a person. The names and labels we use grant us power over the world and ourselves. They make it easier to understand our lives. I think it's important that we have that. Yet language (and science) is imperfect, and it's important to recognize that there are areas where the lines start to blur and our categorizations fail. Just because things, or people, don't exactly fit into established parameters doesn't mean they don't exist.
It's been quite a week for me. I spent most of it working (probably over-enthusiastically) on the big project for what will likely be my final class. I finished on Thursday. It's a guide to Internet resources for teens regarding mental health, and you can check it out here! (I learned a ton doing it.)
Then, yesterday, a new story for the chronic illness annals: I went to the dentist. I've been having trouble with bleeding gums and such, which I suspect is the result of my very restricted diet (which just keeps getting worse because my digestive system keeps deciding it's bothered by new things), so the hygienist was examining my gums. Suddenly she said, "Can I look at your throat?"
As she looked, pressing my tongue down with the little mirror tool, her expression went very serious and a little alarmed. "You've got pus spots on your tonsils," she said. "I think you have strep."
I was just as surprised as her. My throat had been hurting for about a week, and I was a bit more tired and headachy than usual, but it hadn't been enough to warrant concern for me. The pain was mild, at least for me, and of course I'm accustomed to feeling sick. The dentist looked and confirmed the spots, and I went to urgent care. I didn't really think it would turn out to be strep, but the doctor there tested and confirmed it. I have strep, and I didn't know it until the dental hygienist looked at my throat.
I had strep a lot when I was younger. I remember having a hard time with the pain even the one time I got strep after my fibro first developed. I suppose after everything I've been through with interstitial cystitis since then (it's an honestly torturous condition), my entire definition of pain has shifted. My tolerance has gone up enough that I perceive pain on a different scale. It happened with the fibro, and I suppose it happened with the IC, too.
This is the second of two parts (thus far) of my "official" story about living with chronic illness. Read part one, "Fibromyalgia: My Story" here. This also acts as a kind of part two to my mental illness story, "Obsessive-Compulsive: My Story," which can be found here.
*Contains discussion of suicidal thoughts*
Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME), is a medical condition characterized by long-term fatigue and other long-term symptoms that limit a person's ability to carry out ordinary daily activities.
Interstitial cystitis (IC), also known as bladder pain syndrome (BPS), is a type of chronic pain that affects the bladder. Symptoms include feeling the need to urinate right away, needing to urinate often, and pain with sex. IC/BPS is associated with depression and lower quality of life.
Postural orthostatic tachycardia syndrome (POTS) is a condition in which a change from lying to standing causes an abnormally large increase in heart rate. This occurs with symptoms that may include lightheadedness, trouble thinking, blurry vision, or weakness.
-- via Wikipedia, the free encyclopedia
As of next month, it will have been four years since CUCUY (originally titled SAMMI), the most recent original novel I've written, first came into being.
Welcome to September, everyone!
Today I thought I'd share some examples of technology from science fiction that I can't wait to see become the norm in real life. Sci-fi is probably my favorite genre, both to read and to watch, and I think it's great how it has inspired (and continues to inspire) the real-life creation of many technologies. But there are still a whole lot of things from sci-fi that we have yet to create, and I want them.
When people complain about the existence of modern technology, what they fail to recognize is that technological advances often improve quality of life for disabled people. Every invention that allows tasks to be accomplished more easily makes it possible for disabled people to do something that we couldn't before. For example, most of my life is conducted via the Internet. Without it, my disabilities would make it impossible for me to accomplish as much as I do and to have the social life that I do.
As such, most of the technologies on this list aren't just cool or useful; they can also act as disability accommodations. These technologies would allow me, and many, many other disabled people, to live a better, fuller life. For example:
Many disabled people are unable to drive. Many more struggle to endure long distance travel. Others have mobility issues that make walking difficult. All of these things are true for me at this point in time, and so one of the sci-fi technologies I most look forward to is teleportation.
Many sci-fi worlds possess the ability to instantaneously teleport across various distances. Star Trek, for example, has transporters that can move people (and objects) across feet or across thousands of miles. Many fantasy worlds also have this power, such as Harry Potter's Apparation.
In December, I posted a five month update about all the progress I'd made with my chronic illnesses since going to Mayo Clinic at the end of July/beginning of August 2017. It's now been a full year since Mayo Clinic, and it seems appropriate to post another chronic illness update. So here's what's changed since then.
Since December, I've continued to make progress in many ways. The most significant is with my interstitial cystitis. Since I developed it in 2016, I've been at a constant pelvic pain level of at least a 6 (on the Kira Pain Scale, which I know for a fact is skewed upward from a regular person's pain scale). But in April, I started taking gabapentin. At first it didn't do anything, but once I hit the right dose, my IC pain level dropped dramatically. It's now down to about a 3 or 4, the same general level as the rest of my body. While the gabapentin didn't have any effect on my fibromyalgia pain, despite being approved for that, its effect on my IC was something like a miracle. Gabapentin, basically, is to my IC what antidepressants were to my fibromyalgia.
Since then, I've been able to reduce my bladder instillations from once every other week to once a month. I've been able to start wearing skirts again, instead of just dresses all the time, and yesterday I was able to give loose sweatpants a successful test run. I've also been able to add a few more foods to my diet, and I'm much less afraid of setting off a horrific flare if I eat the wrong thing.
It's been a while since I shared a "day in the life" post. This is mostly because I've been so sick for the past few years that my daily life is not really that interesting. But I do want to share some of the reality of chronically ill living with you, and my life has improved enough to keep it from being too super boring. So I figured it was time to share, not a day in my life, but a week in my life, starting last Saturday.
*Long post ahoy!*
When you're someone with chronic illnesses, going to the doctor is a uniquely frustrating experience. So just as I once updated you on my condition via Supernatural gifs, today I'm going to share the experience of going to the doctor via some pretty grainy Star Trek gifs. Enjoy, add your own in the comments, and I'll be back tomorrow!
Your doctor, when you list all the conditions you have:
We're still waiting on the cover for my next "Waiting On" Wednesday, so today, I'm updating you on what's been going on with my health since I went to Mayo Clinic, back in late July/early August.
*A one year update (August 2018) can also be found here.*
When I got back from Mayo Clinic, I was already noticing some improvement. I'd realized, during their fibromyalgia/CFS seminar, that I had been exercising too much for my body to handle in its current condition. While at Mayo Clinic, I didn't exercise at all, and by the time I got home, my tremors and loss of balance had pretty much vanished. This was, of course, a big relief, and it made walking a lot easier. Evidently, my body's response to the overexertion was to respond with those neurological symptoms.
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