The way I have been feeling lately is similar to that of when I almost drowned during the Tidal Wave event that happened several times throughout the day and at least twice during the same hour in the Texas-shaped wave pool at Six Flags Fiesta Texas.
Before I knew it, my ring float was somehow attached to me by only my hand, and I… I was bobbing on the surface, trying to stay up. The waves pulled me closer and closer to the deep end, and all I could do was struggle to stay above the surface. There were lifeguards, but I don’t think they would have seen me if I had drowned—if I had stayed beneath the surface for too long. It was loud from the alarms sounding off each tidal wave, each alarm growing closer and closer, and I thought, “This is it. I’m going to die, and no one will notice.”
I often compare anaphylaxis to this feeling. It hurts too much to hit that almost-dying breaking point. It hurts too much to feel like I am drowning all over again.
I was raised to believe God doesn’t give people things they can’t handle, but I didn’t believe it. I’m not sure if that makes me a bad person, I just… I don’t believe it.
I feel like it draws a silver line around grey clouds in hopes of whitening them.
We have medicine, like EpiPens and albuterol, to help us handle things. There have been several instances wherein I was certain I would need my EpiPen, but thankfully, my inhaler worked out for me. Each time, however, I was so, so scared. My family doesn’t take my allergies seriously—I don’t trust all of them enough to trust them not to slip in a life-threatening allergen—and it breaks my heart.
Everyone who barely knows me calls me “smart”, but why must it be to the extent that I can be a doctor? I’m not that smart. I don’t have the smarts to qualify for that. Why must “smart” be the go-to compliment? It doesn’t make me feel any better; as I’ve stressed, or at least tried to, many times before, I am not book smart. I’m not a genius because I know how to work with computers. I aced through math in high school, but I have none of those skills now.
I have PTSD… I lost a lot of skills to PTSD. My memory sucks.
I want people to stop labeling me as “smart”, because it’s not anything special. I know how to survive and settle, and I consider that “smart”, but I’m really sick and tired of just surviving and settling, and… and I want more.
Unlike that day at the wave pool, there is no man to pull me up from the water and ask me if I’m okay—there’s no one to lead me back safely to shore and help me every step of the way.
There’s no one to do that now, because I’m supposed to know how. I’m supposed to know what things I neither know about nor understand mean, and I don’t. I was never taught these common sense life lessons other people just know, and it makes me feel so alien. There’s never anything I do completely right that doesn’t have the flaws picked out. If I clean my room, that one cotton ball I didn’t notice was on the floor and under the bed is picked at, and such is demanded to be “picked up”, because the room is a “mess” still.
When is enough enough? Can’t “okay” be acceptable for once? I’m a perfectionist when it comes to certain things—special interests—but I… I just want to be accepted as “okay”.
I’m tired of people expecting me to “compromise” and “meet halfway” when they don’t even do anything. It’s all me.
And it really sucks.
They want me to be independent someday, but they won’t walk me through the steps—baby me—so I can fully understand exactly how to do this, because I’m supposed to just know automatically, and I don’t. My brain is physically not wired that way, and they’re surprised when they find I did something wrong—annoyed and frustrated, actually—and they talk to me as if I’m stupid.
I’m not stupid, but I don’t know these things.
There’s no program that teaches autistics how to live independently that I have found that also isn’t reflective of the stigma. There are “training” programs, but I don’t want that. I want something that allows me to be my own person and make my own choices. I don’t want someone else to feel the need to make my choices for me.
I just want to know how to do these things, and the fact that I can’t, no matter the amount of hours I have spent researching this crap, hurts and makes me feel inadequate.
It’s unfortunate, because when I finally make it to the point of full-on independence, I’m not going to want the weight my family puts on me keeping my head from staying above the water.
My passions bring me more joy than they do, because my passions, though difficult at times, don’t pick out my flaws or tell me I’m inadequate. They make me fit in in this diverse world; they make me not feel alien.
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