I knew SJM was going to heal Chaol. It’s the entire premise for the book, so of course she would. I just had no idea it would feel like this.
I know I made a vague post about Tower of Dawn, but then I tried to go to sleep and realised I was still pissed so here’s a detailed account of what the phrase “get up” means to me, an actual disabled person, rather than SJM, an abled person who decided to write a disabled character being healed by nothing but those two magic words.
So here’s what get up means to me:
It started with sleeping in. It got harder to wake up every morning. My parents were convinced that I just wasn’t motivated enough, so they kept telling me to (guess what) get up. Because that’s what you say to a moody teen that won’t get out of bed, right?
Then, I started falling asleep in class. I developed a rash over my legs that made walking painful, and the pain felt like it seeped into my bones over time, leaving my legs painful constantly. I walked oddly, stiffly, around the house and at school, and it aggravated a knee injury I had from a car accident 3 years prior, one that I thought had healed within 2 months of the accident. I was wrong, and I’ve continued to be wrong to this day. The rash healed, but my knee did not.
Eventually, I stopped going to school. I tried multiple doctors until I found one that my mother liked. This doctor seemed to believe that I should be woken at 7am every morning, come hell or high water. She misdiagnosed me with an autoimmune disease (easy to do, given that CFS bears striking similarities in some cases) and subsequently viewed my chronic fatigue as a symptom of a greater problem, one she could treat with vitamins, antidepressants, a better diet, more sunlight, etc, etc.
I, being 14, didn’t get to say that she was wrong. I didn’t get to say that it hurt me when I went to physiotherapy under her orders and was forced onto the rowing machine. I didn’t get to say that it hurt me to do stretches sometimes, that it upset me when I was told to stop being lazy, to get up. I sure as hell didn’t get to tell my parents to stop trying to wake me up at 7am.
My fatigue grew worse. Soon, I got delirious when my mother tried to wake me, often having no memory of her waking me the first few times. She’d insist that I spoke to her when she woke me, that I acknowledged her, but I couldn’t remember. I’d wake at noon after 5 hours of being woken up every 10 minutes with no memory of being woken previously. I thought I was going crazy.
And through it all, I was told to get up.
Soon, I figured out that pain kept me awake. To stop myself from falling asleep in class and getting into trouble, I started beating my injured knee. It never bruised or bled, but it kept me awake. It helped me get up. I wasn’t to know that that would leave me with an injured knee to this day.
Soon, it escalated to me being unable to stay awake for more than 4 or 5 hours at a time. My school attendance was adjusted to only half-days, until even that grew too much for me. Sleep became painful, and I had to prop my knee up on a certain angle to keep the pain at bay for long enough to get the rest I needed, waking every time I shifted in my sleep.
Desperate, my parents and doctor cooked up a plan to admit me to a hospital for what they called “sleep therapy”. Basically, medical personnel would do exactly what my mother had, only they’d enforce a curfew, take away my laptop and electronic devices at night, force me into an exercise regimen, and, in my doctor’s words, “reset me”. After my experiences with physiotherapy, I was terrified of having no voice there.
Thankfully, we moved away at that point, and I lost touch with my doctor. Being admitted to that hospital became impossible given the distance, so I started at a new school with new kids. I had to explain my illness to every teacher I had, because none of them knew I was disabled. Apparently there’s no memo-type arrangement for that. It was mortifying. On my first day I was forced to walk the marathon track through the bush. I was 16, but I couldn’t articulate to them in a way they respected that it wasn’t just a matter of willpower, whether or not I could walk the track.
Turned out, it was. I willed myself through the track because I was embarrassed. I got through the day. Because I’m that strong and inspiring, right?
When I got home, I collapsed. I spent the next 24 hours in bed, unable to even get up to pee. All I did was take pain medication, eating when I needed to to take stronger doses. I barely remember the next 3 days after that, spending most of the time sleeping in bed, sleeping on the couch, or sleeping in the shower.
I received no apology from the school.
Eventually, I got up again. I went back. Months passed, and even though I only attended intermittently, I was soon appointed as a Student Leader. I have a loud personality, when I’m awake, so I guess they figured it would be useful in some capacity. I expressed concern about attending the student leadership training day, but was informed that I couldn’t become a student leader if I didn’t. So I went, having been assured that it was indoors.
First was a hike up a cliff. I almost fell over three times, convinced that if I did I’d never live it down. My knee gave out once, but I managed to stay upright. Several of my peers joked about me looking exhausted because I “wasn’t used to exercise”.
We sat down at the top of the hill, then. You know how, if you have an injury, it feels worse the next morning when you wake up? For me, sitting down without heat packs applied to my joints does the same thing. I’ll always hurt more when I get up.
So, sitting on the hard ground for half an hour listening to some camp counsellor talk wasn’t ideal. When it came time to leave, I knew I’d be so much worse.
It took me several tries to stand. Several people deemed it necessary to tell me to get up.
We walked back to the main house and sat inside for a while, talking. I was not provided with a comfortable chair, as they were few and far between and I was lagging behind the group. No one offered me one. I was the last to arrive, so I sat on the floor. Because that’s fair, right?
Later that afternoon, we were broken into groups for a scavenger hunt around the woods. I objected, informing a teacher that I was tired, but he told me that if I stayed in the house someone would have to stay to supervise me, and everyone was getting involved in the hunt. The same teacher that promised me there was no physical activity involved in the trip made me feel like my pain was a burden while I was trying to learn how to be a leader.
I went through the motions of the scavenger hunt, sitting down on the ground and rocks where I could. Not because the pain would stop, but because my legs felt like jelly and the amount of time I could spend on them was decreasing. The more we walked away from the main house, the more panicked I got. What if I couldn’t walk back to the house? I didn’t have a wheelchair, or anything to help me get there. I voiced my concerns to the other members of my group, but they informed me that I was being dramatic and it was “just a little bit longer”.
I did make it back to the bus. I limped into my mother’s car at the school where we met up, and fell asleep immediately.
When we arrived home, I had to walk out of the car and into my bedroom, which was up a flight of stairs at that time. I fell over at the bottom and bawled my eyes out, practically crawled up them, and had to have food and water brought to me for 3 days afterwards.
All because they told me to get up. Get up from the ground, get up from my chair, get up the cliff–I had to do it, right?
I received no apology. I dropped out of high school a few months later.
Get up doesn’t cure disabilities. It puts us in danger. I don’t get up anymore. I roll out of bed after 12 hours of hibernation, but I don’t get up. I don’t set alarms. People don’t wake me (deliberately). Physically, I don’t really get up anymore. Not like this. Getting up for me means sitting up, tying my hair back, and getting to work on my novel. That’s getting up. Sometimes I can’t even do that.
I knew SJM was going to heal Chaol. I’d accepted that. I just had no idea it would feel like I never want to get up again.
