Wednesday, March 25, 2015

Wacky Wednesdays: fandoms & chronic illness

Fandoms can play a huge role in how we approach our lives. They can give us motivation or the will to push through the hard times, commiseration and consolation, or help us celebrate and laugh. They are also wonderful for figuring out how to express ourselves in unspoken or unrevealing ways to the right people.

Even if you don't know what a fandom is, you're likely a part of more than one yourself. Are you a Trekkie who named your son after your favorite captain? Would you enjoy a visit to the danger zone? Are you always ready to run in case you encounter a mysterious person with a blue phone box? Is part of you still waiting for your acceptance letter to Hogwarts? Would your dream job be working at the Ministry of Silly Walks?


No matter the fandoms you're a part of, you no doubt agree that they can influence our lives from the type of clothing we wear to our kitchen gadgets and bumper stickers to how we act towards other beings.

When I'm not feeling well, I reach for shows and movies (and music, but that's for a different day!) that I know will cheer me up or guide me through things. With Netflix, DVRs, Hulu, and other technology, we can so readily have these wonderful films and shows at our fingertips.

For much of my life, I've identified with Batman.


I believe that a lot of that stems from feelings of abandonment and neglect. I'm not an orphan, but growing up it sure was easy to feel that way. Batman uses his anger and his frustration for good instead of taking the easy way out and harming others for the hell of it. He struggled with his inner demons, his emotions, and his grief.

As I grew older and time passed, I became very interested in the Harry Potter series. I'm sure that it has to do with the same reasoning.


I was praised as a child for being smart, but then picked on for being naive. There were many similar experiences - and that's just at home. When I went back to school, it got even worse. Harry's story, not dissimilar to Batman's, finds an abused child with some issues saving his friends and protecting others. Not only is he able to make friends, which was a comfort to me reading the fourth book the summer before returning to school, but he's able to stand up to institutionalized norms that don't make sense or refuse to deal with reality. Honestly that helps to fuel some of my patient advocacy work.


Harry's family situation continues to comfort me. There are two terms that I've used in the past to describe my family issues - family of origin (FOO) and family of choice (FOC). Harry's FOO would be the Durleys just as mine wasn't the best. There was a long time where, like Harry, I did most of the things around the house from laundry to cooking to cleaning at a very young age. You get no say in your FOO, and that can be really hard. Your FOC on the other hand is all based on choice. It can definitely include people in your FOO - I like to imagine Harry reconnected with his cousin after the final battle in the book. My sister would be that person for me. My FOC includes so many amazing people (and many of YOU!). It wasn't until really going through the HP films after they'd all come out that I really understood those terms.

HP got me through a lot of hard times. I knew that I could make it because he did. I won't pretend like I can save the world as he does, but I know that I can make an impact. I also know that the impact I have will be greater with my loved ones around me to help. HP encourages me to keep going, to keep pushing, even if I don't feel like it. To make that reminder even more permanent, I got a tattoo referencing the stars from the pages of the HP books. They help serve as a reminder of the tough things that HP and I both went through - that things really did happen. They also help me remember that I'm writing the pages of my book right now. In May of last year, I finished a hard chapter and turned the page.


I could write about Doctor Who, but I just don't have the words. There is so much out there on DW and philosophy and I feel ill prepared to tackle that at the moment.

Being chronically ill can be so isolating. We often feel like we don't participate well in 'real' life because we aren't as healthy in body or mind which puts certain limitations on us. I don't have much of a social life where I live because I'm often low on spoons and/or just ready to go home and not deal with other people at the end of my work day. Sometimes it's because I get sick so easily that I worry about going places at the height of flu/cold/etc seasons.

One of the nice things about fandoms is that no one judges you for spending a whole weekend binge watching episodes of shows on Netflix while hanging out in your PJs, eating Ben & Jerry's or other horribly unhealthy comfort food, and not getting much sleep.


No one judges you for devouring a book and ignoring 'real' life because that book was too good to put down. No one judges you for playing zombie video games from the minute you wake up to the minute you go to sleep.

Most importantly, there are no requirements to fandoms. You can like Orphan Black even if you're not a clone. You can enjoy traveling the 'verse with Mal and the Firefly gang without having an orange hat. You can even find joy in leaping with Spiderman from building to building or fighting baddies with Batman despite the fact that you can't walk.


There *is* a problem with representation though. Disabled people in fandoms generally are the ones in a victim role or have magically overcome their disability in a way to be a hero.


It's not representative of real life. You could argue that it doesn't always need to be, especially as fandoms are often very out there, but some more accurate representation would be nice.

I asked my friend Felix Quinn to write a piece on fandoms as well:

Fandoms as a whole can be a therapeutic thing for people who feel isolated and trapped by their illnesses. For me, they have given me a platform to speak without being cut off due to someone believing I didn’t have it in me to connect dots, etc. My favorite fandoms to participate in are In The Flesh and Steven Universe. But to keep this short, I’ll stick to talking about ITF.


The “In The Flesh” fandom is extraordinarily open about exchanging ideas that would typically (in the mainstream fandoms) be shot down without a second glance. When a show focuses around characters that have to medicate daily in order to function within their realities, it’s going to draw in a certain group. And that group has be amazingly comforting, accepting that we all view this one small piece of media in a different way. And all these conglomerations are right. There is no wrong answer with them, and that’s why I’ve enjoyed participating so much. There is no pretentiousness, no “fandom famous” blogs. It is incredibly accessible to all who want to participate.


The ITF fandom has helped me see it is okay to be comfortable with who I am, and how I am. I think, especially with chronic illnesses that tend to get worse instead of better, there are parts of us that feed into the ableistic idea that, naturally, we are monsters. We are flawed. And for that, we should resign ourselves to a quiet life where our interactions with others are kept to a minimum. To view a piece of media that tells us otherwise about anyone who dares to venture from societies view of “acceptable”, brings people together who feel quite the same. I am very thankful for the small fandom and the beautifully diverse and sometimes complicated conversations that take place. I am thankful, even if I am quiet now and again.

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