Chronic Illness · My Health Stuff · Random Life Stuff

Why Do I Write? A Crazily Long Answer

Why Do You Write?

Wow, that is quite the question, isn’t it?

Well, I tried to answer it on The Story of the Silver Sun and What’s in a Name? pages. However, I also tried to keep those descriptions succinct so that people would actually read them. Let me see if I can elaborate. (I may repeat myself a little, as you may notice if you read those pages, so please be patient. I’m just going to tell the whole story.)


First of all, I’ve been writing in some way shape or form for a LONG time. I got my first diary for my sixth birthday. Granted, I didn’t write in it every day, but I did use it. That diary took a long time to fill, because I got a second diary, later, that I worked on at the same time. The first diary was “for life” and the second was “for love.” I’m such a dork. The second one is almost painful to read, since it starts in junior high, so it’s all the stereotypical “the boy is so hot, does he notice me?” stuff. Neither diary would be considered “quality work,” well, it might be if you asked a bunch of kindergarten through second grade students. While they aren’t quality, they ignited a love of writing that never died.

I was bullied absolutely horrendously starting in about fourth grade (well, the bullying started in kindergarten, but it got really bad in 4th grade). This triggered a deep depression that I still have not climbed out of, and most likely never will completely. I don’t remember when exactly I started writing poetry, but I was going strong by sixth grade. Now, most of my writing never got shown to anyone. As I said, I was depressed, and I was extremely embarrassed about my depression; I wanted to pretend like nothing was wrong. I wrote a lot of really dark things, and my creative writing still tends that way. I have never really stopped writing creatively. In high school I even took a creative writing class, which was absolutely fantastic. Even now, I frequently jot down short story ideas on random pieces of paper or random tech based documents. I have a drawer for all my creative writing, and it’s so full I can barely get anything else in it; it weighs a bloody ton! I definitely identify with the Sylvia Plath quote that accompanied this assignment:

“I write only because
There is a voice within me
That will not be still”

— Sylvia Plath

This drawer is entirely full of creative writing things. And yes, that paper on top is a normal notebook page.
This drawer is entirely full of creative writing things. And yes, that paper on top is a normal notebook page.

Now, obviously, this blog is not actually a creative writing blog. So why do I write this blog? Well, oddly enough, the second quote that accompanied this assignment fits here:

“That’s why I write, because life never works except in retrospect. You can’t control life, at least you can control your version.”

— Chuck Palahniuk

I’ve always had some health issues, for as long as I can remember. When I was five I got diagnosed with asthma, and we already knew my allergies were atrocious. In elementary school, I hurt myself a lot. I wasn’t a gentle child, but I definitely got hurt far more often than anyone else I knew: sprained ankles were a weekly thing, hurt wrists were extremely common, painful knees (as it turned out my patella was not where it was supposed to be), huge blisters from the monkey bars (larger than my friends that played just as much), tons of bruises and scrapes because I fell a lot, etc. Since I was getting hurt so often, no one believed me and pretty much everyone thought I was faking it. I can’t say I necessarily blame them, I’d be a little skeptical too. I faked stomach aches (some of them) to get away from the bullies, but I even got those far more often than my classmates. I was always getting sick too, cold after cold after cold. Asthma can weaken the immune system, and it didn’t help that my elementary school gave out perfect attendance awards (kids came to school sick constantly). Junior high still saw tons of sprains (actually, even more of them), and it got to the point that I could walk on a sprained ankle if I wrapped it with an Ace bandage. My asthma wouldn’t improve, which made basketball quite difficult (but I enjoyed it, so I tried my hardest). High school still had all the sprains, and then I started getting pain in my lower back. Yes, at 14 I was having rather intense lower back pain. I also was exhausted, constantly. I didn’t realize how bad it was until my friends started asking, “How are you? Other than tired.” Oh, wow, yeah, that’s a problem. I finally told my doctor, and she did some blood tests. Turned out at some point I had had the Epstein-Barr virus. I asked what the symptoms were, pretty much just extreme fatigue and all the symptoms I always had from my allergies. Now that I’m older, I realize I could have had that infection for over a year (rare, but not unheard of). I also decided to try high jumping for a season (I loved it, but there was drama that I didn’t want to deal with). I was going to the trainer so often for twisting my ankles that he decided before every single practice I had to come to him so he could tape my legs from the middle of my foot to just below the knee. Eventually, I learned how to do it and got my own tape so I could tape myself before practice and meets.

trainwreck health

Not only did I get hurt a lot, but I always seemed to have more pain than everyone else. Just general pain. I’d get injured in some way, and it would hurt for far longer than it hurt anyone else, and more intensely. Like, I’d run into a table and get a bruise, I would have intense pain (as if I was still running into the table) for over an hour usually, I would bruise a bit worse than expected, and it would hurt me for a few days after the bruise went away! Everyone else thought I just had the lowest pain tolerance in the world. As I’m realizing now, that just wasn’t the case. My pain tolerance wasn’t low, my pain receptors were on full all the time (or they had two settings, off and emergency) so I was actually feeling far more pain than my peers. As I got older, however, I started getting hurt and not feeling the pain as badly as people expected. During high jumping practice one day, I severely messed up a jump; I landed on top of my arm. Well, that doesn’t sound bad… until you realize that my arm went behind me such that the inside of my elbow was what contacted the pad. So yes, I kind of turned into Gumby. Obviously, my dad had to come get me and take me to urgent care. I was in excruciating pain and couldn’t move my arm without wanting to pass out (I’ve only passed out from pain once, and it was in college). The urgent care center xrayed my arm, because they thought I probably broke something, and the nurse was shocked that I hadn’t. What I did do, however, was manage to severely hyperextended my elbow (and I believe my shoulder too but I didn’t notice that until my elbow started feeling better days later). Interesting thing? I didn’t even kind of swell or bruise anywhere. Not even a little. As it turns out, I only bruise from localized impacts, and I almost never swell (when I do it’s barely noticeable). Turns out, you can even break bones without bruising and swelling.

arm in sling

There have also been times throughout my entire life where I will just suddenly get extremely physically irritated. I will just want to tear all my clothing off because it feels like ants are crawling on me where it’s touching. My hair has to be in a ponytail (or completely back in some other way) because anytime one stray hair touches my face, or gets stuck in my shirt collar, I get overcome with pure rage. Normal noises make me freak out, and snap at people. Everything would just get so overwhelming I couldn’t handle it. So I’d stub my toe and break down into a puddle of tears over everything, even though I barely felt the toe thing. Also probably why everyone thought I was being wimpy.

ahhh

I’ve talked about these things with Joleen (physical therapist and Pilates instructor), and she agrees that I probably have had fibromyalgia for most of my life. Children definitely get fibro, but adults don’t tend to believe them (thinking they’re trying to get out of school or something similar), so it often goes undiagnosed. Even when the parents believe them, it can be very hard to convince a doctor to do all the testing to exclude everything else. Since I’ve likely had fibro most of my life, we think the knee injury that set it off (read: My Chronic Illnesses (part 2)) probably just caused it to get a bit worse and flare up for the first time. My fibro doc also suspected I’d had it far longer than I’d realized, but didn’t say all my life. Recently, however, he did say I definitely have Joint Hypermobility Syndrome (JHS). He mentioned that because I asked if I might have EDS (Ehler Danlos Syndrome) and he said that the testing is kind of expensive, and it wouldn’t change my treatment at all because JHS and EDS are kind of sliding scale things (as far as symptoms, though EDS is actually genetic). JHS is usually inherited, apparently, which means I have had it my entire life. That means that all the sprains and such were probably caused by it. Now that I have a name, I will be doing more research.

The only thing I can't do is the thumb on wrist thing.
The only thing I can’t do is the thumb on wrist thing.

Anyway. As my health stuff got worse, and I started getting all sorts of weird diagnoses (plantar fasciitis so badly that the doctor would have guessed I’d been working retail for 20 years, not that I was 20 years old, etc), I started to flounder. If it hadn’t been for Dan (who is now my husband) I don’t know what I would have done. It felt like life was being pulled out from under me. I’d always hoped that I would get healthy as an adult, that everything was just from puberty being tough on my body. I had planned out my life like I would be healthy. I was supposed to finish college with a bachelor’s degree, get married, have kids, travel all over the world with my family, be a NatGeo photographer (or similar), and have all sorts of crazy adventures. If you have been reading my blog, the only thing on that list that is currently completed is the married bit. My plan has needed to change.

rugs frequently pulled

After every diagnosis, I would head to Google. I have always been scientific, so I needed facts and research. I would stumble across personal testimony from “typical” cases… which I never fit very well. As I had a harder and harder time finding people like me, I started to feel very alone and lost. Why me? Why did I get to be the living science experiment? Finally, I decided to start sharing with people. The best friends I told were completely shocked. Not shocked in a bad way, but in a way I sure wasn’t expecting. After learning about my issues, many of my friends were completely astonished by how well I was still living my life and doing the things I wanted to do and getting out of bed every day. What? I felt so weak, as a person, and here my friends were telling me the opposite. That was weird. A few new friends, that I got very close to quickly, said similar things. Okay, so it must not be just because my close friends loved me. I had not wanted to start a blog about my illnesses because I thought I wasn’t worth writing about. My friends, however, seemed to think differently. Their encouragement, and Dan’s, helped me decide to start the blog. A good friend, who is a creative writing major, helped me come up with the name. And I started writing.

Blogging

I keep writing because, as it turns out, it is very therapeutic for me; something I need to remember when I go into a depression spiral. I hope that through my writing, someone that isn’t as lucky socially (having a rock for them to anchor to during rough times) will realize they aren’t alone. I know that the community I have found because of this blog has helped me realize that myself. It has also helped me realize how strong I am, because I will find myself reading something and saying to myself “that person is so strong, good for them” and then thinking about it and realizing I’m doing exactly the same things. I write because life has been rough, but I need to manage my perception of life via this blog. I write because a little voice in my head just plain ol’ won’t shut up. I write because I am a writer.

no choice strength


First assignment for Blogging U Writing 101

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