Dear clusters of stardust that have formed the awesome people reading this,
The past week has been one of the best I’ve had in the last year. I started my new job as a receptionist, and despite work being extremely tasking on my mind and body, and coming home as a zombie lump each day, I am hoping it’s a job I can keep at least until I find a better way to survive.
I also launched my new YouTube Channel which is a goal I’ve had for at least three years. Finally accomplishing that was an enormous deal to me, and I’m more than thrilled about it.
Making YouTube videos is hard work in itself. I have to write scripts, edit them, film god knows however many times my perfectionist tendencies force me to, edit THAT, create text, images, and whatever else I find the video is in need of. It’s exhausting and certainly frustrating considering I am both a n00b and without many of the resources I wish I had, such as proper lighting or a real camera.
But good lord, do I fucking love creating.
I’m sure I have mentioned in my writing before that the last six years I’ve lost most of my passion and desire for life. I just went into survival mode, doing the activities I was told a human at my age should do. At 25, I should be either just finishing up college or just starting a job that would catalyst me into my lifelong career. At least, that’s the bullshit we ‘re told. I know a large amount of people who have done this, and some of them are even married with children as well, which is wonderful for them.
And then there’s me, who spent three hours today designing an 8-bit TIE Fighter for a YouTube video.
But. I mean. Look at that. That’s pretty fucking rad, you guys, and I’m not even a little bit bias.
While I may not be doing what some would consider appropriate for my age, for the first time in a painfully long while, I am certainly doing something that I absolutely, honestly love. Creativity and connecting with others have always been my nature; and after a quarter of a lifetime, I found a way to use both to make something new and positive to throw out into the ether.
Though I am happy when I am creating, the moment I stop being distracted by it, I am flooded by what I always feel; pain all over my body from my head to my toes, anxiety, depression and worry. It eats at me every second, and while there are times I stop paying so much attention to it, it’s still there, quietly nibbling away at my being.
It’s extremely disheartening to realize that even at my happiest, I’m still in an overwhelming amount of pain. No matter what I do, I’m ultimately still an unwell girl, made of sickly stardust.
I felt terrible when the second my boyfriend came home from a long day of work, my sadness and frustration erupted from my lips. “No matter what I do, I’m still hurting. I’m still in pain and it never stops, and even if I get a little better somehow, I will still always feel this pain. I remember feeling the pain in my back and my jaw when I was in first grade…I have truly been sick my entire life and I don’t know anything else. And it really fucking sucks. Whether I’m ever a receptionist or YouTube creator or mother, I’ll always be that, plus being sick.”
I love my boyfriend dearly and he is one of my very best friends, but he isn’t always the greatest with words. I’ve learned to try to accept him for that. Yet this evening, he said the most incredible statement that hit me like a lightning bolt.
“Many of the things you’ve done not even healthy people can say they’ve done. Instead of saying you’re doing all these great things plus being sick, why don’t you think of it as doing these things in spite of being sick?”
Isn’t it a little bit insane how two words can change an entire world?
As this night has gone on I’ve finished everything I’ve had to do. Laundry, dinner, YouTube stuff, etc. While I’m pleased to finally fall into my bed, spoonless and exhausted, the less I occupy my mind with, the more I feel the pain. My back is braced and feels like it’s lined with razors. My jaw is tight and stressed, and I can feel how one side hangs lower than the other. My mind is racing with everything that is problematic in my life and dripping with dozens of worries that make me feel fragile and shaken. My legs feel weighted with concrete. I am feeling a dozen or more horrible sensations all over my body, and while most days I’m good at handling it, tonight I feel like I want to rip myself out of my skin.
But I can’t, because I am not a reptile.
While I am proud of all I’ve accomplished this week, which has honestly probably been more than I have accomplished since moving, I feel awfully sick, and though I have been trying to less and less, I still find myself wishing that I was a “normal” girl (by that I generally mean averagely healthy). No matter how I wish though, I am not a reptilian Disney Princess. I will never be average or standard. Not in personality, not in timeline, and certainly not in health.
I truly believe that one of the hardest parts of being chronically ill and/or disabled is, aside from the obvious, accepting one’s self for all they are. This has been one of my largest battles. I’ve gone from complete denial of my disabilities and illnesses, to thinking that I maybe have some things wrong but they aren’t “that bad,” to finally getting to the point where I am not in denial, but I am not drowning in self pity, either (at least, not usually, but everyone is allowed a day or two of self pity). Acceptance is something I will probably be fighting for as long as I live. The fight is definitely worth it.
I realize how hypocritical that is considering I made both this blog and my YouTube channel to help others accept themselves; but honestly, I am starting to think I don’t have to have everything figured out in order get a message out into the world.
My sick little stars and I are just trying our hardest to make the best out of all we have been given. Being creative may not cure me of my illnesses and distracting myself may only act as a band-aid for my struggles.
But if I can learn to do what I want, create, and as my friend says, create the “new normal”, all in spite of being sick, I will never be okay.
I’ll be so much better than that.
A moment of love
A moment of love
A moment of love