Royal Heart, Andrea Gibson
“I can’t live here. In my body, I mean. I can’t live in my body all the time, it feels too much. So if I ever feel far away know I am not gone. I am just underneath my grief, adjusting the dial on my radio faith so I can take this life with all of its love and all of its loss.”
When I was 19 I discovered that I had Lupus and later that same year I found out I also had Antiphospholipid Antibody Syndrome. Slowly I began to accumulate other illnesses like there was a buy one illness get three free deal. At this point in my life I was in denial of the changes in my health and that I wasn’t going to get better.
I could adapt and treat my symptoms but it was never going to go away.
It wasn’t until I had to drop out of school because of my frequent absences due to doctor appointments every week and constantly being sick that it first hit me. I had already had to quit working for a few months after my first hospital stay and that was awful.
I had loss all sense of independence. I had to rely on my parents whenever I needed to make a purchase or to pay for my phone bill and car insurance–both of which I had been paying for since I had started working when I was in high school.
There was no more going out unless my parents knew exactly where I was especially because they were the ones providing for my gas. No more keeping my bedroom door locked.
Still no more keeping my bedroom door locked.
Every day was a fight against myself. I would make plans to go out with friends and despite what my body wanted I would force myself to walk for blocks, to thrash in mosh pits, to sit in diner booths, or go to house shows and party.
And then my body would take back what I owed it with days of bed rest because I would make myself ill.
I stopped going to the concerts I loved. Stop planning trips with friends, even day ones. Slowly my relationships fell apart. I don’t have IRL friends other than those that I work with. There’s no making weekend plans or making plans to go for drinks after work.
There are never plans for drinking because of my dietary restrictions. If I drink it’s because I am rebelling against my own body.
All of my hobbies were out of reach. My first love was basketball. I was so good at it and it was my life from age seven to sixteen. Even though I stopped playing competitively, I still went out to play with friends whenever possible.
The last time I played basketball I was twenty. That was five years ago.
Concerts are another problem. They used to be the one crowded and loud place I could go to with no problems. But I can’t anymore for the same reasons I can’t play basketball.
I spent the last concert I attended sitting in a booth by the bar away from the stage watching the concert on the television screen so that the bartender could babysit me while the venue’s medical staff checked on a kid that got injured while crowd surfing.
All I wanted was to watch Saosin live for the first time and I wasn’t even on the same floor of the building as they were.
Even art and crafting can be stressful. My body hates when I sit a table for extended periods of time. Hates when I hold brushes. When I curl my hands certain ways. When I want to do anything that’s not lying down.
And even that’s not true considering even lying down is a struggle.
Everyday is a struggle with this body of mine. I’m trapped inside of it, prisoner, to it. Most days it feels like I am not me but my illness(es) and that I will never be anything else.
And although it’s still a struggle of mine, I can say it’s a lot better now.
In September of 2016, I made a new friend on Tumblr. And I owe it to her for this turn around.
The relationship began a year after the summer I spent in the hospital and then on bed rest. That summer was hell. It was the beginning of the end of all of my friendships.
Everything fell apart after that month long hospital stay. The year that followed that hospitalization was the scariest and loneliest year I had.
I was told by one of the doctors that there was a chance I wouldn’t reach twenty-five years old. I was twenty-three at the time.
People that I thought were my closest friends no longer had time for me. I had developed a fear of being alone due to being trapped in a hospital bed and unable to move for a month with no visitors other than my parents and younger sister who came in the evenings.
My parents refused to acknowledge that I was a ticking time-bomb. They didn’t care what the doctor had said or didn’t believe him but whatever it is they carried on with their lives, the only change was that they were monitoring me even closer than before.
Without friends to spend time with and with family I couldn’t speak to, I had fallen back to the same thing that had kept preoccupied when I was younger: reading. Only this time I wasn’t reading books.
Fanfiction. I started to read fanfiction for a pairing I adored ever since I was twelve. I read everything I could find and read hundreds of fics in the span of two months. Some of the fics were completed and others were dropped. There were only a few that were ongoing that caught my interest.
And then there was the fic. A fic that was written currently and was updated once a week. A fic that had an author with a Tumblr account that was still their current URL.
It was a simple message using the direct messaging system but it started a correspondence that lasted months. We discussed headcanons and points in her fanfic and I recommended my favorite fics from the collection I had accumulated in the two months I had been reading. It got to the point where she wondered why I didn’t write any fanfic.
It was time for me to confess that my only experience in writing was my original work that I used to scribble away into random notebooks and only shared with two other people before. She was interested in reading my original work and fifty chapters of that later she brought up fanfiction again.
So I tried it out and wrote a fanfic called The Planning of a Matriarch. And boy did that change my life.
I never expected to become a popular fanfic writer in the SasuSaku fandom. I still don’t consider myself as one despite what my friends say but I do have enough of a following to have people talk to me about my fics.
And that has really helped me these past two years.
Becoming a fanfic writer has sparked the most interaction I’ve had online ever. And it helped me make new friends. I don’t get to see them unless we video chat and voice chatting isn’t an every day thing but we message every day and I’ve become really close with other members of the fandom.
Writing fanfiction has in a way saved me. I was a lonely, lonely person that was just waiting for the day when everything would be over. But with every comment I get, with every new friend I make with my writing, there’s something to look forward to about the next day.
So now at twenty-five, turning twenty-six next month, I am continuing my passion for writing here. Some of it will be fanfic but now I have the opportunity to start writing original work again and share it with more people.
And I hope you all enjoy reading my stories as much as I enjoy writing them.
One thought on “So Why Make Chronically Day?”
People think that fanfiction is a waste of time but few of us really knows what it does for us. I admire the way you used writing to lift yourself. I love all your stories.thank you for writing, keep it on. And I hope you have a good day everyday, miss Day
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