I’ve always loved writing. There’s something endlessly fascinating about putting words together. I envision what comes out of my head as visible music, where the words touch, repel, arch, and dance with each other. When I read the words of others, sometimes it feels like taking in a song through my eyes. Words have frequencies and cadence. No person puts them together in the same way and each time, the result is a unique song that to be repeated, shared, and revisited. Good writers weave thick chords of musicality into their words that can be examined and felt over, and over, again.
Writing helps organize my feelings. If one goes to a symphony performance, there is always the tune up in the beginning. A single note rings out, and the entire symphony joins. For a minute, it is cacophony. Discordant noises rub against each other. Sometimes you hear the quick flit of a scale being played. Then, the noise settles down and the story unfolds. Sometimes I’m surprised at what comes out. Sometimes I revisit what I’ve written and realize I’ve already changed my tune.
Me? I feel like I’m more in harmonica territory, rather than full symphony. Still, the act of writing is healing and cathartic for me, so I keep doing it.
Weeks ago, I submitted some of my writing to various places with great trepidation. I worried about rejection, but even more than that, I knew that I wasn’t entirely clear on why I was doing it. Mostly, I thought I wanted to reach out to a bigger audience to talk about Down syndrome. I needed to know if my ideas were shared by more than a few friends. I needed the hope of finding connection with more people who saw parenting a child with Down syndrome similarly as I do. People who would stretch my thinking. I’ve already found many of these people through this blog but I wanted more. It was also an act of spreading my writing wings, as one friend so aptly described it.
Finally, I wanted to know if anything I was writing struck a chord with anyone who didn’t already know me. I’d had plenty of people I didn’t personally know follow this blog, but part of me questioned it. Maybe this is reflects my own lack of self-esteem. Yeah, save it for the therapist, I know. Problem is, therapy is expensive, so here I am instead.
About those submissions. Mamalode took my post about my sister dying of SIDS and is running it today. What I wrote was only tangentially about Down syndrome, which I initially thought was disappointing, but ultimately, it feels good. It felt good to hear that someone else thought what I had to say was valuable. Plus, not everything has to be about Down syndrome. I ponder Down syndrome and disability a lot, but I also realize that it might show a emphasis in my daily thoughts that isn’t there. I realized that this has been an act of spreading my wings, after all.
So… I’d be eternally grateful if you visited my story on Mamalode (click HERE) and if you’re so inclined, please share with anyone who would find it meaningful.
Well, what started out as a short post turned into something completely different. Thanks for reading, world.
Why do people tilt their heads when they are trying to examine something closely? Funny, huh? Seems like you’d want to look at something square on.
There’s a word in Korean “삐딱이”, or bbiddaki (I think I’m slaughtering the Romanization, my apologies, but this is what you get for reading the writing of someone who never had any formal Korean schooling), I’ve heard it translated as rebel, but my mom says it is closer to sarcastic. I think a very literal translation would be one who stands crookedly.
I recently came across a saying that uses this word: “삐딱이만 삐둘어진 세상을 제데로 볼수있다.” My very, very rough translation goes something like, Only one who stands crooked can see the true crooked nature of the world.
I’ve been chewing this over for a while, and I think my peeps are onto something.
When we started figuring out that LP had Down syndrome, the world really did tilt for us. Or, rather, we tilted. Hard. From his perspective, all he did was leave my belly, eat, sleep, poop and try to do his thing. From our perspective? The entire world as we knew it changed in about three days’ time. Not that we aren’t always changing, but that one was an earth-shaking kind of big. I sometimes try to remember who I even was before the diagnosis, and it is near impossible. I try, but that person is foreign to me now.
I’ve mulled over that period in our lives (as I suspect I will continue to do for the rest of my life), and while I do remember a lot of anguish and crying, I also remember that after that first storm was a beautiful calm. I had a strange sense of peace that I could not explain. Each time I tried people kind of looked at me like I was close to a psychotic break, even though nothing was further from the truth. So I stopped trying to explain it, but it didn’t make it any less real.
I’d stood crooked.
Maybe not a rebel, because I never chose to have Down syndrome enter into our lives, but I did suddenly find myself off the beaten path. I found myself looking at the world, really carefully, tilting my head. Crooked.
What did I see? A world that had created such a narrow passage to human worth, so narrow that most people couldn’t pass. A world where human beings were trampling over each other to get through that impossible passage. Creating hierarchies of beauty, intelligence, and ability that serve no one.
It isn’t the first time I’ve tilted my head at the world, and hopefully won’t be the last. I think at the heart of privilege, no matter what the basis, is that it is near impossible to see the distortions that cause inequity in the world. It is important though, whether by chance or through intent, to stand crookedly.
Maybe this means throwing privilege away. Maybe this means reacting to life’s “negative” experiences by leaning in, rather than running away. Maybe this simply means being open to life’s hurt rather than hardening my heart, because at the end, I might look back and realize that it wasn’t hurt to begin with at all. Just a chance to tilt my head, stand crooked, but see straight.