body betrayal

living with chronic illness and disability is living with a body that is constantly betraying you.

i only speak from my own experience, which is that of someone who went from relatively healthy with a few weird but livable issues, to disabled, in constant pain, always fighting the truth of my own flesh.

because of it i’m stranded in between believing fully in the social model of disability and knowing that no matter how much we improve society, i’m still going to hate being this way. it will always suck for me.

there are people for whom the social model of disability fits completely, and that’s fine. but for those of us for whom it’s only a factor — well, it gets frustrating talking about it. because it seems like you’re saying nothing matters, we shouldn’t fix anything, things will always suck. or that you’re saying disability means being inherently broken or having something wrong with you.

when the reality is, you’re only speaking for yourself. and while no, being disabled doesn’t mean there’s anything morally wrong with me (something i still struggle to believe because of that great protestant work ethic hammering away at my psyche), the fact remains: i am broken.

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Hope in the face of numbness

This post was originally published on my Medium profile on January 6, 2016.


My left pinky has become permanently numb.

I don’t know when this started. Every day I press it, hard, to the palm of my hand, in the hopes that that feeling, that pins and needles, that signal to my brain that something is wrong with the flesh — in the hopes that will disappear. It never does.

My pinky has become permanently numb.

Continue reading Hope in the face of numbness

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

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