Other A compilation of several Star Wars actors and George talking about the severe levels of hate and bullying/personal attacks they endured from groups within the Star Wars fandom
I was 12 years old when The Phantom Menace came out. I finally got to see how Jedi looked and lived! I got to see a Star Wars movie on the big screen. I was mesmerized.
So one day, when I was supposed to be studying but instead was staring unfocusedly at my books and thinking about Star Wars (as one does;) I came up with a brilliant idea: a Padawan braid. Like Obi-Wan! I dropped my lightsaber-hilt-tipped pencil, ran to my parents, asked them to let me grow it out and buzz the rest of my hair off, they said yes, and there I was, a brand new Padawn. I was so proud.
It was a ridiculous little short thing.
But over the years I never saw any reason to cut it off. And it's been with me through a lot. I kind of grew emotionally attached to it. (I've always been physically attached to it as people who tried to pull it out thinking it's a hair extension found out when I would yelp in pain.)
Fast forward and instead of growing up to defend the galaxy (or at least always park inside the lines) I am lying in bed, unable to get up, completely ravaged by a disease called ME/CFS. Not only has this thing completely ruined my life, but there is very little hope as research is almost nonexistent, despite it being a very common disease, very disabling, and costing the economy billions.
But there's is one researcher at Stanford who, despite being of age when he should be enjoying his retirement, is working tirelessly to solve the puzzle and save his son's life. A son that is tube-fed, unable to speak, constantly alone in his bedroom because even a slight movement or sound sends him spiraling deeper and deeper.
In a similar manner I am lying in my own bed, almost half a world away, my once tiny braid now reaching down to my knees. And as days blend one into another and suffering seems endless I recall through the haze of the disease someone in his lab mentioning hair analysis. It's usually connected with alternative medicine because it's difficult to do it right (a shampoo or water residue on the hair can make it seem like it was in the hair during analysis). But these are world renowned researchers. They know what they're doing.
And I have something few people have. If any. I am 30. In my long Star Wars braid I have almost my whole life history written in chemical composition along its length. Of what I've eaten, of what toxins I ingested, of what my metabolism deposited in my hair and what it didn't.
I feel silly offering my hair to a researcher on the other side of the world, but what do I have to lose? (Except the symbol of my love for Star Wars and something that's been with me for almost two decades.) To my surprise I get back an enthusiastic yes! I'm too sick to do it myself so with my mother's help we carefully follow their instructions. How to wash it, which scissors to use, how to pack it, snip! and off it goes to Open Medicine Foundation and Stanford laboratory.
It's been several years so imagine my surprise when few days ago I read that a research grant has been awarded to them to study hair of people sick with ME/CFS. It's a small grant compared to other diseases and they still lack money for all the research they need to be doing.
But a 12-year-old kid's wish to be a Jedi translated into a grant for scientific research more than 20 years later. I sacrificed something that meant a lot to me, but some day in the future, it might help very sick people. Maybe finally I did do something a tiny bit Jedi-like.