I had a CT scan today. News is much of the same. I’m… irritated more than anything. I have a sinus infection (still) so I’m on a steroid nose spray. My asthma is starting to flare up (Thanks for NOTHING, prednisone) so I’m also going to be taking a breathing treatment every four hours when I’m home. Breathing treatments and I have a long, difficult, and aggravating history. I get paranoid and shaky when I’m on them, thankfully I don’t snap at people, however. I try to not be a jerk.
But blowing out candles, noisy machines, and dry mouth are things I wish I could just not deal with anymore.
At the end of my last post, my mother found salvation. Someone finally listened to her and to me. She broke down and cried, she would tell me later. It was like someone had lifted a weight off her shoulders and put it in front of her. The problem was that I’d gone without proper treatment for so, so, long that there was no sure way of telling where to begin. My mother suggested they just ask me.
This is sort of a theme for me, my mother isn’t stupid. She’s made foolish choices in her life, but everyone does. For her own part, she did everything that was in her power to be a good mother. That included paying attention to how I thought. She didn’t really care much for “age appropriate” material and so she didn’t pay attention to things like that. If I enjoyed something and understood it, that was all that mattered.
This included my own treatment. She’d sit me down and explain, “this is what is wrong with you” using exact words and phrases. For the first time a doctor didn’t laugh at her when she did that. I remember this woman and I will remember her for the rest of my life. She was tall, very pretty with dark skin and a no-nonsense haircut. She didn’t wear any perfume and she was very clear when she spoke. She listened.
So she rolled a chair up to me and looked at my face and told me that she knew I was sick and that I didn’t feel good. She also said that she knew that other doctors thought I was making stuff up, and she knew better. Then she asked what bothered me.
We started with a breathing assessment. Anyone who has had a lung function test knows what I am talking about. It honestly hasn’t changed much. You take a deep breath and blow into a meter. A computer screen that’s attached to that meter has birthday candles on it. If you push enough air through, the candles go out.
I was upset that I couldn’t blow any of them out.
I wish that I could say that she magically plucked proper treatment from some glorious doctor’s bag. She didn’t and if you pulled up all the inhalers that have been used since the late 80s I’ve been on them at least a month. They finally gave my mother no other choice but to literally wipe me out with medicine. For over a year I couldn’t have carpet, normal bedding, or any stuffed toy. My mom let me have one that was very important to me, but that was it. Then they blasted my tiny system with a pretty powerful drug cocktail.
It sucks to see other little kids playing outside and not be able to.
This is how I started playing videogames. It was a huge deal for me to get that Nintendo, and I ate up videogames like you wouldn’t believe. They were better than books because I controlled them. I could do all the things in gameland that I couldn’t do out in reality. For me, videogames provided stimulation and a lifeline that I simply couldn’t get before. My favorite were the Final Fantasy games. I started writing my own stories and coming up with elaborate plots. I was learning to draw as well, I wasn’t horrible, not great, but not horrible.
I didn’t have the internet and “fandom” wasn’t exactly a thing then, but it was something. I kept most of my stories tucked away, shared them with friends when they came over and sometimes with my mom. To me, my fandom was a frail, fragile thing like my health. I was, in part, afraid to put it out there, because it was all that I had. There were months at a time where I couldn’t get up and do anything other than game, read, and write. If I showed this to the wrong person, then they could destroy it. What would I be left with then? All of my energy sometimes went into simply being well, I couldn’t fight with anything else. And in these stories I could write a hero. I get defensive to this day when people chastise fandom. I’m not so delicate as to say that it kept me alive, but it gave me a vehicle to do so.
With gaming came Haunted House on the Atari, then later on an old PC, Clocktower. I’ve played all the Resident Evils, every Silent Hill and Fatal Frame. My mother used to come into my room and say “Oh, Lily, that’s …are you sure that’s not too scary?” It was, and it wasn’t. I could control this, even if ghosts and monsters and mutants could jump out and kill me. I’d been afraid of dying, this wasn’t the same. The jumps and hollering made my heart race and it gave me that endorphin rush that running and jumping gave for every normal kid. I tried my hand at writing horror stories as a kid, but I never quite got it right. I could tell a wicked ghost story though, by the time I was healthy enough to go to campfires I would keep all of my friends from sleeping.
My condition improved enough for me to join reality in my early teens. I didn’t leave horror or gaming behind.