The Ups and Downs of a Swing

Earlier this week I traveled to Helena, Montana to speak about life as a person with schizophrenia. It was a surreal experience – my first travel experience with a speaking engagement, meeting a person I’ve known for a year but only through FaceTime calls, and getting out of the flatness of my suburban life in Indiana. I loved it, and I can’t wait to do more.

The day after I got back my mom decided to come to Fishers to help babysit my newborn niece. I was tired but wanted to see my family and be as helpful as I could, especially since my sister’s life with a newborn is one of sleep deprivation, constant stress, and her aggressive FOMO (something I literally can’t understand). So, my sister, her three kids, my mom, my sister’s mother-in-law, my sister’s nephew, and myself all met at a park to get the babies out of the house and let the toddlers run around the playground. It was a nice time, not unlike all the other times I’ve been to this park.

I’m not really a kid person. I love my nieces and nephews, don’t get me wrong. It’s just kids, uh, absolutely terrify me. I don’t want them. I’m not exactly great with kids, but I do enjoy spending time with my family and want to do what I can to help my sister.

I chased the kids around an enormous playset, helped them climb jungle gyms, and cheered for them when they went down a big slide (although this felt ridiculous since gravity was the only thing happening, but whatever).

The twins absolutely love swings. While my sister and the kid’s grandmas talked over in the shade, I pushed the twins and tried my best to hold conversations about all the favorite things – colors, dinosaurs (of course), toys, and things that are either made up or I just failed to understand their words.

After a few minutes, the grandmas came over to keep the kid’s company, though in reality, I think they came to keep me company. They wanted to know about my trip. They asked how it was, what I saw, what I spoke about, and if I was going to be doing more.

While we were talking, an unrelated grandmother and her granddaughter joined us on the swings. Within about a minute of putting the little girl in the swing, the woman looked at me, grabbed the child, and walked away. My mom and my sister’s mother-in-law didn’t notice and probably didn’t even think about it.

But, I did. I knew why they went to explore the rest of the playground.

It wasn’t that this little girl didn’t like the swings. It was because the grandmother heard our conversation.

More accurately, she overheard I have schizophrenia.

This happens to me when I’m in public. I get asked about my life, schizophrenia comes up, and in minor ways, people react. They don’t know me, don’t know my story. But they know the word.

I’ve caught glances, seen people walk away, look back and whisper to a friend. I’ve been given the up and down, not to check out my body or outfit, but to see if they can find signs of an illness that exists inside my skull.

I’ve never had a stranger accost me because of it, but I know what that silence carries.

I see these reactions, and I feel them, too.

I’m not sure you do. I’m not sure a normal, abled person is aware of the hyper vigilance the simple name of an illness can spark in those diagnosed with it.

I’m not ashamed of my life or my illness. I’m not afraid to talk about my illness in public, even when the things I’m talking about aren’t cheery or “normal.”

However, this wasn’t one of those conversations. Actually, the conversation I was having with my mom and sister’s mother-in-law was incredibly encouraging. They were proud of what I did, what I’m doing, and what I’m going to do. They gave me compliments. And both of them said that speaking to an audience of 200 wasn’t something they would do.

I was brave and vulnerable and courageous and smart and interesting and funny and . . . a schizophrenic.

I was exceptional, but I was still disabled.

I’m doing what I can to help raise awareness of the how unbelievably misunderstood my illness is, but, in doing so, that means I am walking around with an illness with a harsh name that elicits reactions from people that don’t know anything about schizophrenia or my life.

I got a tattoo to remind myself of a lyric from a Sleeping At Last song called Page 28. He said, “I’m trusting that there’s such a thing as elegance in dissonance.” And I am trusting in that, mainly because I know it’s true.

I know the dissonance intimately and inseparably. But I know there is elegance in it. I know my life, my work, and my conversations can be all be beautifully poignant things I can feel proud of.

But, eloquence (in words, actions, or life) will never erase the dissonance.

No matter what I accomplish in life, I will still have schizophrenia, a disease of dissonance.

Life will have dissonance, too. The more I talk about advocacy, the more I will see the subtleties of the stigma surrounding schizophrenia. But, I’m working on it. Literally.