Yesterday I went to get my monthly haircut and promptly took a selfie because I felt shiny as fuck. I also wanted to take a picture of my hair looking nice before the severe storm came and had the chance to ruin it. I think I look pretty okay (and not too sick) in the photo; my hairdresser did a truly fabulous job with my hair, but a tiny spot in the photo caught my eye . That little red bump on my nose that looks like a pimple but is actually not; it is a permanent scar from one of my many failures.
When I was 20 years old I began to slowly come in to myself and decided that I wanted to start on what I had hoped would be a journey of getting lots of tattoos and piercings. I decided to start with my nose (because it already stands out so much it may as well be embellished). My friend had it done a year prior and had no problems, so I thought that it would be just as easy for me. A quick shot, a little blood, and I’d be on my way.
Of course, because I am me, I had no such luck. I went to the mall to a shady little kiosk run by a woman with a solemn face that expressed she had no interest in anything including piercings. She drew a black spot on my nose, then told me bluntly, “don’t. move.” Those were the only words she spoke to me. She then shot my nose with the piercing gun, and naturally I flinched because it was loud and…well…piercing. (I’m a writer, I swear!) “You moved!” she scolded. She pierced me again, and again… And then I passed out.
Though I was unconscious I am sure I fell from the raised chair onto the tile mall floor. I woke up in a sweaty, nauseated daze to the woman and a security guard look down upon me. The guard was noticeably worried while the woman still had yet to express a single emotion. As always, my Vasovagal Syncope was triggered and I ended up being carted off in an ambulance. This was also before I knew I had the disorder at all.
At the time I was living with two family members who were also the ones who were the most abusive and dysfunctional. I did not tell them I was going to get my piercing because I knew they would have prevented me from doing it after demeaning me relentlessly. Of course, I ended up having to tell them since I had to be fetched from the hospital.
When I arrived home it was just as I predicted; I was screamed at, scolded, made fun of, and humiliated thoroughly. I was still feeling sick from my episode and was feeling worse by the moment. I had fallen to the floor unconscious in front of a number of strangers and yet somehow they thought I needed to be made to feel worse. I went to my room, barricaded the door (as I often did because it is a trick you learn living in an abusive home) and cried for several hours. I felt frustration, guilt, shame and hatred for my entire life. Dramatic, I know.
This experience was only one example of many instances where I tried to do something seemingly normal for my age and it turned out terribly wrong because I am just not like everyone else. My chronic illnesses love to remind me that I am unique, to say the least. Now, seven years later, I still find myself often focusing on all that I can not do. it’s depressing and exhausting to realize multiple times per day that things others don’t even have to think for a second about are difficult or impossible for me for one reason or another. Whether it is taking a bath, lifting something, eating regular food, dying my hair or any of the other numerous things I either cannot do or have to work extra hard to do, I never get used to my can nots.
It is incredibly easily when dealing with chronic illness to be sucked into the world of can nots. It happens to me pretty much on a daily basis, and it does me absolutely no good. It does not help my anxiety, my depression or my physical illnesses. Especially in my worst bouts of depressions, my inabilities seem to overtake me completely; and they leave me feeling positively depleted.
I did not have a healthy childhood or a healthy teenage life. I was also not a healthy young adult and I am not a normal adulty adult now. Through each stage of my life, there were parts of life that people of my current age should be able to experience, even if it gets them into a little bit of trouble. My entire life, I was too sick to be edgy, rebellious, or mischievous. Though I still had a few late nights and I did sometimes lie about where I was, I always paid for it, not because I was caught but because my health would constantly betray me.
I remember that I rebelled at a very early age against my abusive family and refused to either be like them or be permanently damaged by them. I recall every illness I’ve had to fight off and every hospital stay I’ve had to get through without proper support. For every bully and abuser I have had, I eventually ripped myself away from them in hopes that I would find a healthier life, even if I had to fight extremely hard for it. I’ve fought against depression and anxiety for years, and every day I am alive is a day I have won, even if I can barely get out of bed because of it. I am constantly rebelling against that which does not positively serve me.
If there is one thing Star Wars has taught us, it’s that badass rebels come in all forms. Some are tattooed and pierced, others in sensible sweaters or suits. Some are space cowboys while others are alien princesses. Some with hidden illnesses while others are in wheelchairs. Most are a combination of all sorts of aspects that make up who they are on the inside and outside. Regardless of what we can’t do or what we look like (or don’t look like, in my case) what we can do is so much more important. It can be difficult to remind ourselves of that, but no matter our restrictions, our capabilities still matter. They matter so much, and they can still be invaluable to both our lives and other’s. We can all be rebel fighters of our own lives.
I’ll be there for you, Jyn. Cassian said I had to.
~K2 the sassy robot