A day in the life of someone who has a spinal injury

It occurred to me that, while I often mention my injury or identify as disabled, I don’t really talk about what it’s like to live with this injury. I think people get confused, because some days they see me doing things that make it look like I’m a-ok, and the next day I can’t even get out of bed.

The fact is if you don’t have an injury like this, or chronic illness or disability, you don’t know what it’s like, and you really won’t unless something happens to make you end up in that position. Before the spinal injury I was a much different person. I was suffering from various chronic illnesses, some of which I’m not even sure of the name, but they did not take as great a toll on my health and wellbeing as the injury did. Before the spinal injury I could not have ever conceived of what life would be like right now.

But I can still try and shed some light on what it’s like. For me, at least — I don’t claim to speak for anyone else who may have a similar injury or situation, and I certainly don’t claim to speak for people who are disabled or chronically ill in ways much different than I am. I’m only speaking for myself, and I hope it helps explain things to people who don’t live this every day.

Ok. So, every day I start out with a pool of units of energy — I refer to them as spoons, and so do many other chronically ill people. (That link goes to the article that started the use of the “spoons” terminology.) I’ve personally extended the spoon metaphor to include forks (mental health energy) and knives (social energy), but as this post focuses on my physical energy I’m only going to be talking about my spoon supply and demand.

My Oma's spoon collection. More spoons than I get in a regular day.
My Oma’s spoon collection. More spoons than I get in a regular day.

On a Perfect Day, I have about 100 spoons. Please note, perfect days never happen. I’m only including them as reference. A perfect day means I had a perfect night’s sleep (no nightmares, didn’t wake up during the night, slept in a perfect position), woke up in no pain, am full of energy, didn’t borrow against spoons for the past week, and feel only minimal pain for the rest of the day. The first two things never happen. The second two happen, but only occasionally.

More likely than a Perfect Day is a Good Day. That means I had a good night’s sleep (minimal nightmares, only woke up a few times, slept more or less in the right position that doesn’t exacerbate the pain), woke up with minimal pain, had a pretty good amount of energy, didn’t borrow against spoons for the past few days, and felt minimal to moderate pain for the rest of the day. A Good Day gives me about 80 spoons.

The days I have most are OK Days, and especially so now that I’m recovering from a broken leg (which has made my back worse, as it’s been overcompensating for the lack of left leg support). Ok night’s sleep — moderate to heavy nightmares, woke up several times, didn’t sleep in good positions — wake up in moderate pain, have minimal energy, borrowed against spoons minimally to moderately for the past few days, and felt moderate pain for the rest of the day. OK Days yield a pool of 55-75 spoons.

Bad Days are the worst, and they happen more often than Good Days. I have a shitty night’s sleep, wake up in a lot of pain, have almost no energy, borrowed against spoons heavily in recent days, and feel a lot of pain all day. Bad Days yield a max of 50 spoons, but that’s a high estimate.

What’s borrowing against spoons? That’s what I do when I’m out of today’s spoons but I must continue to use spoons. I borrow tomorrow’s and sometimes the next day’s, too. I actually borrow a lot — way more than I should. This is why I have so many OK Days and more Bad Days than Good Days. Part of the reason I find myself borrowing so much is because I’m still not mentally adjusted to being sick and tired all the time. I keep signing myself up for things I could have accomplished three years ago but can’t today.

Now. Each activity I do throughout the day takes a certain amount of spoons — a price tag, if you will. But those prices aren’t constant. On a Good Day prices are much lower than on a Bad Day. On a Good Day, loading the dishwasher and starting it might only take me 3 to 5 spoons. On a Bad Day, it might take 10. And it should be noted that, with my leg still healing, the prices have all spiked, no matter what kind of day I’m having.

So, let’s look at Monday, October 13th. Thanksgiving.

Continue reading A day in the life of someone who has a spinal injury

Thanksgiving

Ok, it was yesterday so my timing of this post is a little off. I have been seriously low on energy lately so writing posts has been difficult for me to do.

Anyway. A lot of people expect that I hate Thanksgiving, because I’m American Indian, have a degree in First Nations Studies, and am very vocal about how awful it is that the US has Columbus Day and we shouldn’t celebrate a dude who killed, enslaved, and raped a bunch of indigenous North Americans. I mean, you know, just saying.

While I loathe Columbus Day and think it should be renamed into Indigenous Peoples’ Day or Bartolomé Day or something else, anything other than honoring the father of the transatlantic slave trade, I don’t actually hate Thanksgiving, for all the parallels drawn between the two.* That’s because my experience of it is pretty different from the way the Thanksgiving experience is portrayed in a lot of western media.

That school play thing where half the kids dress up as Pilgrims and the rest are Indians and there’s a giant turkey and it’s all very sappy and simple and glosses over the intricacies of the actual history, not to mention talking about “the Indians” as if we up and went away to the Undying Lands all Tolkein Elvish-style? Yeah, never had that. (The play specifically, I mean. I’ve experienced plenty of talk about Indians being “gone” or “lost to history” and will likely continue to experience that on a regular basis.)

The pat story about how the Pilgrims and the Indians survived the winter through the Power of Sharing? Was never really a Thing. I wasn’t even fully cognizant of that being part of the story until I was in my preteens. At which point, well, that seemed ridiculous.

Thanksgiving was always presented to me as more of a harvest celebration, where we’re grateful for the fact that we have food and shelter throughout the cold nights, and as a reminder that not everyone is as lucky. I don’t know if that’s just the way I was raised or if it’s more common in Canada to see Thanksgiving this way, but it’s how it was for me.

Also, once Mom and I moved to Hawai’i and began celebrating the US version of the holiday, it had the benefit of being a holiday that I was sure to have with her instead of on access with my father. (There was one Thanksgiving I spent with my father, when I got a week off school to come back to Canada in October, and brought my best friend. She’s forgiven me for that experience, thankfully.)

Finally, I fucking love turkey, stuffing, mashed potatoes, and pumpkin pie.

So while Thanksgiving might have dubious origins, and while it may contain enough threads of colonialism or just, well, being a family holiday to taint it for many people, for me it’s a celebration of thanks, harvest, togetherness, and PUMPKIN.

PUMPKIN SPICE FOR THE PUMPKIN GOD.

*cough* Right. Where was I?

Thanksgiving! Yes! So we spent Monday evening at Mr. Katje’s sister’s place. I made a pumpkin pie and it was a huge success. It was only my second pumpkin pie; the first one didn’t have enough pumpkin spice in it and the pumpkin god was displeased. Also it was bland. But I have pictures of the first one and not the second one, so here you go:

Making my first pumpkin pie!
MIXIN IN THE MIXER
Annd in the oven.
OVENIN’ IN THE OVEN
Smells delicious!
READY TO BE DEVOURED. PUMPKIN SPICE FOR THE PUMPKIN GOD.

Looks delicious, doesn’t it? Well, its brother was.

If you celebrate Thanksgiving, I hope you had a wonderful one, full of all your favourite holiday foods and people.

-Katje, who is thankful for pumpkin

*Probably important to note here: I adored seeing 1492: Conquest of Paradise in theatres and I listen to the soundtrack to this day (in fact I’m listening to it now; it’s VANGELIS HE’S AMAZING). I visited Dominican Republic for the quincentennial celebration of the “discovery” by Columbus and there were huge parties. While now I acknowledge that Columbus was an ass and isn’t someone we should celebrate, that doesn’t change the fact that I didn’t know it then (I was 5 or 6 after all) and I still had an amazing time. And while I haven’t seen it in ages, I’m pretty sure I’d still enjoy the movie 1492: Conquest of Paradise even if Columbus is the protagonist. And I wouldn’t feel guilty, nor would I try to make anyone else feel guilty for enjoying that film or the music.

Just, you know, it’s possible to hold opposing thoughts in your brain at the same time without being devoured whole by them.

Moon Moon

So last night was supposed to be this big blood moon eclipse thing, right? We didn’t see it. We tried, but by the time it was supposed to be happening we got a nice big fog cover, so. No luck.

We even went so far as to drive around looking for a better vantage point (there are a lot of trees on our street) just in case the moon was poking through the fog…of course, we didn’t realize until after we’d driven for a few klicks that we’d left the front door unlocked and our gate open.

We are not smart people.

(Everything is okay. I came back into the house waving my cane wildly in the air so I could hit any intruder before they struck. There was no intruder, and I didn’t break anything. Win win.)

What we did see, however, was the pre-eclipse show: a huge (I mean HUGE) halo around the moon at about 12:30am. We took out the garbage together and looked at the moon for a while, and I even got a picture. When we looked at it on my phone screen after, it turned out really well — I managed to capture not only the moon but the halo and the trees below. Ok, so the halo wasn’t that clear, but it showed up. That was way better than what I expected.

So I immediately uploaded it to Flickr and got…this:

Full moon pre eclipse

What the fuck?

I double checked on my phone, thinking maybe Flickr had screwed it up somehow and that I had to re upload. No such luck. Apparently the really great picture I took somehow changed itself to, well, what you see above. Which is a picture of the moon taken with a phone and looks about how you’d expect from that description. No halo, no trees, itty-bitty moon.

(And no, I’m not crazy, because Mr. Katje saw the original picture too. It was better. I have no idea why or how it magically changed.)

(Well, okay, I’m not crazy about this.)

My phone works really well for most pictures but things like this make me really wish I had a proper camera. Like an SLR or something. (I am so not hip to the lingo but I believe an SLR is the thingamabob I’m thinking of. *waves hands vaguely*)

Anyway. There you go. A photo of the moon, sans all the cool stuff happening with it that I actually wanted to capture in said photo.

-Katje

Thoughts on True Blood Season 7 episode 2, or “Gay Blood”

It’s been awhile since I did my thoughts on Episode 1. We’re finally watching these again. Actually we watched this episode a while back and I sort of jotted down some notes but they weren’t very coherent. Decided to re-watch it to get the notes better.

Spoilers ahead. Thoughts for episodes 3 and 4 should be up in the next few days (we did a marathon). Still working on episode 5. No, we are obviously not caught up. After episode 3 we sort of stopped caring for a while.

Thoughts on these episodes are not as involved as my thoughts on the first episode. Or, rather, there are more bullet points with smaller paragraphs.
Continue reading Thoughts on True Blood Season 7 episode 2, or “Gay Blood”

Getting a straight answer from a doctor

Post Doctor's appt selfie. This is my "well that was a depressing waste of energy" face.
Me, post-doctor’s appointment. My “that was a depressing waste of energy” face.

It’s not easy. I feel that’s one way The Doctor is very much like regular doctors — give you a straight answer when you ask a question? MADNESS

But, finally, I did. Yesterday, at my follow-up appointment at the cast clinic. After he told me that I’d probably have to be in the brace and off my feet until October, basically (so, a bit longer than originally thought), I finally got an answer regarding the possibility of ligament or meniscus damage:

They don’t know.

They won’t know until my fracture is healed up, because they can’t do an examination to figure out if the ligaments or meniscus are damaged without risking further damage to the fracture. So in several weeks, I may get an answer to that question.

I’m guessing it’s going to be “Yes, your knee is damaged,” mostly because my knee still feels like it’s been smashed with a hammer and I can’t bend my leg without extreme pain.

But apparently the reason they kept avoiding my questions about the knee was because they didn’t know and couldn’t tell me for a while. Which is all I wanted to know! Just an answer, any answer.

So now I know it’s still on the table, the possibility of more severe damage, and I just have to wait and see what happens. And in the meantime, don’t put any pressure on the broken leg.

This weekend we’re picking up a wheelchair for me and maybe getting me a proper shower at the in-laws’ place. If I’m up to it, Mr. Katje might even take me out for dinner at our favourite restaurant.

I’m honestly pretty excited about the wheelchair. Apparently it has a leg rest on the left hand side, which already makes it a million times better than those stupid hospital wheelchairs. (Yes, I totally have the muscle strength to just hover my leg straight out the entire time I’m in that thing. Not.)

I don’t mean to sound bitter about our experience with BC medical this time around. I’m getting the help I need. I’m just frustrated and tired of being cooped up in a chair 24/7, and looking at another 2 months of being cooped up like this.

Book has been proofed, as of last night. now to change the files and ship em off.
I think I went through 5 stacks of post-it notes.

So, I’m trying to set my brain to productivity. Namely, edits, rewrites, and writing fresh words (and, on the other side of the business: publishing). I’m just finishing up the work for a book by Kaimana Wolff, called Broken Sleep. It’s a really good book, even if the subject matter is hard for me to take. I said in my review that it’s a harrowing exposé of abuse, and I stand by that. It needed a lot of proofing, though, as you can no doubt tell by the picture. Right now it’s on round 3 of proofs. I’m waiting to hear back from the author, and then I can finish up work on it.

If you want to get an ebook ARC — advance reading copy — you can sign up for one here. They will be sent out as soon as I’m done with the ebook formatting.

Regarding my own writing, currently I’m working hard on The Jade Star of Athering. When I started re-writes there were 9 entirely new parts I had to write. Now there are 4, along with the various continuity edits and smaller rewrites within the finished chapters. For the record, editing and re-writing Jade Star has been like trying to marathon through a swamp filled with eels and unspeakable horrors. I am never doing vomit-out-words-and-fix-it-in-post writing again — after this, I’m going back to the much-more-natural-for-me edit-as-I-go style of writing. Fixing it in post is torture.

After I finish my edits and rewrites, I’ll be sending off the manuscript to my editor for the first round of edits. When she’s done, it’ll be time for beta readers to have at it. Once I’ve implemented beta feedback, it goes for its final round of edits, and then I start the publishing process. It’s at this point I release an ARC for advance readers. During the publishing process, we proof the manuscript several more times (and likely find more errors). Hopefully by the time release day rolls around there are no more errors left. (I say hopefully, because we are human.)

When Jade Star is off with the editor and beta readers, I’ll be focusing on finishing up the first draft of From the Ashes, sequel to Stranger Skies. I have a deadline of the end of the year to finish the first draft, but if I’m lucky I’ll get it done sooner.

I’ve got a lot of writing projects planned out for the next year or so. I really want to finish Jade Star and From the Ashes soon because I have another book I’m starting in November — Anala, the sequel to Jade Star and third book in The Third Age. It’s going to need to be outlined very carefully, however, as it happens during the same time period as Book 4 (which is so far untitled).

There’s a lot more on my plate, writing wise, but if I outlined my entire year’s plan here then I’d have no choice but to stick with it and I like to give myself some leeway for failure. (Insert winky face here.) Accountability is great, so long as I’m making myself publicly accountable for things I know I can accomplish.

So right now it’s just a matter of keeping busy with what matters to me, which thankfully is something I can still do while I have a broken leg. I have to be grateful for that — my passion doesn’t involve using my leg. I can still work on it even when injured and chair-ridden.

-Katje

PS: If you want to be first to hear about release dates, tours, events, etc for both my mother and me, then you should sign up for our mailing list. It comes out about once a month, and it gives you the opportunity to sign up to receive ARCs before anyone else can, or to pre-order first. Also, you get 2 free ebooks for signing up. July’s is set to come out in the next couple days, so sign up soon!

Worst. Birthday Gift. Ever.

The title is better if you imagine it being read in Comic Book Guy’s voice.

Long and short of my trip to the cast clinic is yes, I have a broken femur, there is apparently no tendon or ligament damage, and no, I cannot have a plaster cast, because my leg is shaped weird.

Yes, you read that right: I have a weird leg. The plaster cast will not stay on it properly, just as the immobilizer of doom does not stay on it properly — but, the doctor says, the immobilizer will likely be more comfortable, and I can take it off from time to time. There’s also a chance my leg could swell again, which would be very uncomfortable in plaster, apparently.

I have to stay off my leg for 6 weeks. I cannot put any weight on it. I can rest my foot on the floor if I’m sitting, but beyond that? Nope. Nope nope nope.

But anyway, besides all that — let’s focus on what’s really important. I have weird legs, guys. WEIRD LEGS. I can’t even argue with the doctor on this one because he’s right. I’m a freak of nature.

legs

See? This is right after it happened, too, so you can see the amount of swelling in the left leg. But that bend inwards at the knee? It’s super pronounced. When standing straight the edges of my feet almost line up with my hips, and the knees bend inwards to touch each other. And the kneecap is super high up. I know, because I saw it on my CT scan. IT WAS WEIRD.

Also there’s the fact that my legs are sort of shaped like cones, with the tiny end pointing down.

WEIRD LEGS, GUISE. ::does spooky arms::

After the cast clinic we headed home, and this is the conversation we had in the car (this was after my crying breakdown in the hospital).

Me: So this is the worst birthday gift I’ve ever gotten myself.

Mr. Katje: That’s what you get for getting it so early! And now you can’t even take it back.

Me: Nope, I’m stuck with it. Buyer’s remorse or what.

Anyway. I am immobilized for six weeks. In 2 weeks I have to see the doctor again so he can see how the leg is doing. But basically, no nothing for Katje until the end of August.

I have some projects to keep me busy while I’m stuck without a working leg. A big one is writing. I’m trying to get my word count up this month. (I’m participating in Get Your Words Out and I’ve pledged to write 150,000 words this year. So far I’m at just over 80,000.)

Things I'm working on today: writing....
Text from a short story I’m working on.

Another big one is editing and publishing — related to the first, of course, but I’m not always editing or publishing my own works, so it deserves a separate category. Right now I’m proofing Broken Sleep by Kaimana Wolff, and editing/revising The Jade Star of Athering, sequel to Bellica.

I’m also trying to get caught up on my reading. I read very slowly, but with not much else to do I might read more than one book this month. One can hope, anyway.

And finally, I’m powering through Stargate SG-1. I adore this show. I am on season 7, please no spoilers in the comments. (I realize it’s 17 years old but I’ve been able to keep myself relatively spoiler free.)

...and Stargate SG-1. (that shld rly say dreamboat tbh. Mmmmm, Teal'c.)

Mmmm, Teal’c.

Anyway, this is my summer. All this, and no showering (at least until I get the shower chair from Oma’s old place). Don’t visit. Your nose will never forgive you.

If you do want to brighten my summer up, however, you can nominate my book, Stranger Skies, for the awards for which it’s eligible! (Assuming you’ve read it. If you haven’t read it, most of the Advance Reading Copy is available to read here. All of the chapters will be released by October 5th.) Details in this post at my Livejournal. The deadline for one of the awards is July 15th, but the others have more time.

Now that would be the best. birthday gift. ever.

-Katje

Distraction is the better part of valor

In about 6 hours I have an appointment with a doctor at the hospital’s cast clinic. They may be upgrading me from this monstrosity of foam and velcro to a proper plaster cast.

I had to go into the hospital again on Monday morning — a phone call at 5 am told me that they’d missed something on the x-rays and needed a CT to confirm. Turns out I do have a break — a femoral condyle fracture. I broke my femur.

However, I still don’t know if I also have tendon or ligament tears or if all the excruciating pain was from the fracture. There is also still the issue of the slipping/grinding noise/pain that happened that night at emerge when my knee was bent for too long. Since then my leg has been kept straight by the immobilizer, so it hasn’t happened again, but I’ll be asking the doctor about it. I don’t want a possible bone dislocation or something else to get missed.

If it is just a broken bone, then things have improved dramatically. Yes, my summer is still ruined, and yes I’ll still have to spend my birthday in a cast, at home, likely stinky from lack of regular showering (I showered on Monday with the help of Mr. Katje; I doubt I’ll have the energy to do so more than once a week, leastwise not until I’m able to get the shower seat from Oma’s old place). If there’s no ligament damage, I won’t be facing quite as much physiotherapy as before thought.

But I still don’t know. And until I know, I’m not letting myself get too optimistic. The fact is regardless the full extent of the injury, I’m going to be down and out for the next several months. Recovery, whether incredibly long with a torn ligament or comparatively short with just a fracture, is still going to be long, slow, and hard.

In the meantime I have fallen into a deep depression over this. I feel useless and helpless and like a burden, and I hate feeling these things. When it was just a spinal injury I wasn’t the most active of people, but I could still do my part. I was in pain daily but I could move about and get things done. Now the most I can do is sit around in a recliner all day, trying not to move my leg too much in the immobilizer-that-doesn’t-immobilize.

I am trying to fling myself into writing, editing, and publishing — useful, productive things I can do. It hasn’t cured the depression but it does distract me from it for a little while.

Distraction is currently my best weapon against despair. Instead of sitting and staring into space, thinking about how much this fucking sucks, I open my computer and work, or turn on the TV and watch Stargate and let the absolute adorableness of Teal’c carry me away from my problems.

How the Amoeba Cat became a creature made of spun glass

Content warning: this is an incredibly depressing post about the injuries I’ve suffered over the past 2 years. It’s also rather graphic. Do not read if you suffer from emetophobia (fear of vomiting), for one, or if you don’t want to read anything somewhat TMI. I also talk about depression, suicidal thoughts, and I do not end this post on a happy note. This is not an inspirational story of overcoming adversity. It is a matter of fact telling of things that happened to me and how much they fucking suck.

~

As most of you know, I have a spinal injury. It happened, I believe, in 2009, but somehow didn’t flare up till 2012. Bodies are weird. I’m quite sure it was 2009 because that’s the only time it could have happened — there was a drunken theatre party and a few of my compatriots decided to start wrestling and landed on my head. I felt my entire spine compress, a line of loud pops ringing out from my neck to my pelvis.

The pain was short-lived, so I didn’t think much of the incident. The fact that afterwards I started feeling a new pain in my lower back whenever I walked uphill or anywhere for a long period of time was easily ignored: I’ve had chronic back pain since I was 9 or 10. This was obviously just a new permutation of it. I ignored it.

It was in January, 2012, after I got home from my trip to Orlando, Florida, that the spinal injury finally made its presence fully known — 3 bulging discs in the lumbar region — and I became a self-proclaimed cripple. (Was it the rides I went on at Universal Studios that finally tripped the back into full blown agony? Or was it the 3 feet of snow I had to drag my heavy, Harry Potter-merchandise-laden suitcase through when I got home to cold Nanaimo? We may never know.)

I was bedridden for weeks and it was only with physiotherapy was I able to walk again, albeit with a cane. I completed my theatre show, knowing it would likely be my last. I adore acting and I always give 110% to any role I’m in. The reality of my life post-injury is that I must always be careful, and I cannot trust myself to be careful if I’m in a show. Whatever the director asks for, I will do. I cannot set boundaries; I sacrifice myself on Dionysos’ altar.

I stopped going to physiotherapy — not because I was done with it, or because I wanted to stop, but because it’s not covered by MSP and I have no extra insurance. Each visit is in the ballpark of 50 dollars, and I would have to go a few times a week for several months to get the sort of results — back to a degree of normal living — that I want.

Instead I’ve tried to remain as active as my back will allow me to be, and kept as positive a worldview as I can. I was suicidally depressed during my weeks of being bedridden, crying into my mother’s arms about how my life was ruined and I would never be the same. My youth was over — something I felt I never really had in the first place; a childhood cut short by the trauma of an abusive father and an 11-year long divorce. My 20s was when I started to reclaim some of what I’d lost, and now that, too, was cut short, by a body that was broken.

But I had come to a point where I was finally starting to feel better about my different life, and I had begun a job search for work outside the home — something I didn’t think I’d be able to do again. (I get zero assistance, even though I’m permanently disabled.) Maybe after I got a job I would even be able to afford physiotherapy, I dreamed. Maybe within 6 months I would be able to walk without the cane.

Then on Friday, July 4th — Independence Day! The irony burns — after coming home from driving Mr. Katje to pick up his truck from the mechanic’s, I slipped and fell in the kitchen. My leg twisted severely, and I was racked with pain so terrible I screamed uncontrollably for 5 minutes.

Continue reading How the Amoeba Cat became a creature made of spun glass

Auditory Processing Deficit: It’s not a hearing problem, but…sorry, what did you say?

I have Auditory Processing Deficit. I’ve had it for most of my life — the test that shows the age level one’s auditory processing is at starts at age 5 and goes to age 18, but we are fairly certain my deficit started when I was 2 years old. Trauma can often be the cause of these sorts of deficits, and there was a doozy of one directly associated with hearing and listening when I was two. (I’m not getting into the story right now. I might at some point in the future.)

Before I took the test, mom thought I was just being a teenager with selective hearing. She’d have to repeat herself several times before I would remember what she said. I explained that I wasn’t forgetting or mishearing things on purpose; it was just that I literally had no memory of her saying certain things.

When I took the test she realized it was an actual problem, so we took steps to fix it. The test, called the Gibson Cognitive Test Battery, is part of a program called PACE — Processing And Cognitive Enhancement. It tests several areas of processing and function in the brain — the framework upon which you put content learning. Auditory processing, memory, visual processing, and other areas are tested. Often people who bottom out in one area will max out in another, because it’s their brain’s way of coping. I had maxed out on visual processor and a few other areas.

It’s a program my mom does, and she’s damn good at it. I did the program with her, though I didn’t get the full benefit. Ideally PACE is done quickly — the 36 hours within a few weeks — because this ensures the most advancement for the brain. Because mom had other students and I was in theatre we were both so busy we rarely had time for PACE sessions. We did the program over 2 years, often sitting for several hours in a session, determined to get as much done in one sitting as possible. For the longest time I held the record for levels passed in a session — not hard when your sessions are 7 hours long.

Still, even though it took us 2 years to do the program, I came up several ages in the areas I was lacking. When we were done I was age 16 in auditory processing — that was an advancement of 11 years (14 if we accept that the deficit was lower than 5 and likely at 2 years of age).

We tested me again recently and I have somehow made it up to age 18. However, I still struggle with remembering things that are said, and when I’m stressed or tired my processing goes down the tubes. (It also does not help that Mr. Katje is an avowed mumbler.)

It’s important to note that auditory processing is not a hearing problem. It is not a physical problem with the mechanisms for hearing things — my ears work fine (with the exception of the constant tinnitus). It is a problem with my brain — specifically the area used to process sounds.

However, so few people are even aware of auditory processing deficit as an actual thing that when explaining why I don’t listen to podcasts or why someone has to repeat something to me a few times to make sure I remember I often default to saying “I have a hearing problem,” even though I don’t. I can hear you just fine. Unfortunately, my ears don’t always give my brain the memo — especially when I’m stressed, or when the words are said in certain tones (because said tones stress me out). And these days I’m pretty much always stressed.

It’s honestly pretty shitty having this. School has been a struggle since high school, and last time I asked a teacher to slow down because he was speaking a mile a minute and I needed extra time to process, he said “Why don’t you try just listening?” (As if I wasn’t.) I explained the processing deficit and he and the entire class laughed in my face. That was in University, by the way, but this wasn’t the first time I was treated like that for having learning disabilities. (I was in Special Ed throughout high school and I swear, the fact that my mom kept fighting for me to get certain help in school was the only reason I graduated. If it weren’t for my mom I would have dropped out.)

Because the test that shows the deficit isn’t considered an official source by most schools I often can’t get any concessions for classes. This, combined with my other learning disabilities, depression, anxiety, and more recently physical disability, ensured that it took me 10 years to get my Bachelors instead of 4.

There are tons of podcasts I’d really like to listen to regularly, but I can’t because podcast listening for me entails sitting stock still and concentrating very hard on everything being said. It’s exhausting, and soon my mind starts to wander and then I need to rewind and find my place again.

Also it contributes to lack of communication with people I love, which creates fights. Just the other day I thought Mr. Katje said something that he didn’t, and we fought for over an hour over it. I misheard a sentence because I was really tired and my processing skills weren’t up to par, and he was mumbling more than usual that day. We made up, and talked it out, and all is forgiven — but I hate fighting with him and for that hour we were both miserable.

But, like with all things I have to live with, I learn to cope. I’ve done what I can to bring up my auditory processing to a manageable level, and I’m planning on doing PACE again with mom — maybe it’ll improve some more. In the meantime, I accept that I might always have problems processing what people say, and I work harder to keep it from adversely affecting my life too much.

In return, I only ask for a little patience from my loved ones.

So next time I need to ask you to repeat yourself, or I don’t remember what you say, please don’t take it personally. It’s just my super fucked up brain making my life a little more difficult. (So original, brain. I applaud your creativity. /sarcasm)

-Katje

Thoughts on Season 7, Episode 1 of True Blood

Yes, I watch True Blood. Mr. Katje and I marathoned through several seasons and then got all caught up, and started catching episodes as they came out.

If you asked us why we’ve stuck with it we’d likely respond with “Stockholm Syndrome.” The show is like a trainwreck: awful, but you can’t tear your eyes away. At some point the only characters on the show we weren’t constantly wishing death upon were Lafayette, Eric, and Terry. (Other characters had their moments but these 3 were the only ones we consistently did not hate.)

All of the protagonists are stupid. The show is terribly written. They handle rape so awfully I should be surprised but sadly I am not. (Seriously, really really awful.)

And yet we keep coming back. We’re addicted to it, like one gets addicted to V.

So on that note, my thoughts on the first episode of the final (thank gods) season. There be spoilers and a lot of swearing ahead; mind yerself. (though if you haven’t seen it my thoughts might not make much sense, anyway.)

Continue reading Thoughts on Season 7, Episode 1 of True Blood