Real Talk – Disability and the New Adult

Before I begin, the disclaimers:

1) This is not meant to be about me – except that it is, but it’s meant to be about me in a way that helps you as a writer.

2) Every experience with disability, as with every other life circumstance, is one hundred percent unique. Therefore you can only take my words for what they are – a straight up story about how this thing goes for me. You may beg, borrow and steal for your characters at will.

And now we may begin for real.

I don’t consider myself a person with a disability. To me, disability is something that interferes with ADLs – activities of daily living – on a daily basis and prevents or presents a significant barrier to one’s independence.

However, there are times when I feel inescapably and gut-wrenchingly disabled. On these occasions – true but embarrassing fact – I cry, eat candy, take long naps, and fuss to all my friends. And then I move on, because I’m too stubborn to believe there’s something I can’t do.

Here’s the facts: I have a movement disorder called Paroxysmal Non-Kinesigenic Dyskinesia, which is basically a word vomit way of saying my body does whatever it wants to whenever it wants to. I had early symptoms starting at seventeen with tremors and myoclonus – jumpy muscles – and almost two years ago, I started experiencing more significant symptoms which escalated over the next six months.  By the time I had an initial diagnosis I was taking six medications, each multiple times per day. I couldn’t drive, run errands, work full days, or even take a shower without wondering if I was going to be struck by fits of wild movement. By the time I’d been “sick” for a year, I was down to one medication and largely functional, save when something caused my symptoms to flare up, and that’s the way I’ve been since.

This isn’t a post about PNKD so I’ll spare you the details, but that is my situation and will be for the rest of my life. I will never get better, save for a miracle. And it’s this reality I want to explore over the next couple of weeks, and how this reality infiltrates and has shaped my early adulthood.

NA is growing at lightning speed, and what’s really exciting is that I’m starting to see a lot of people looking for and writing NA that stretches beyond the average person’s experiences and delves into issues like direct workforce entry, early marriage, caregiving roles, and disability. The reason I am doing this series of posts on my own experience as a “New Adult” with a disability is that I want to encourage a discussion and awareness about the unique way this disability thing MIGHT impact a character or shape a story based on what I’ve seen and felt. I also want to make this an opportunity for other New Adults to share their own stories about disability and independence, all along the spectrum and in all sorts of conditions, so that those with disabilities might feel empowered to tell their own story and those of you who don’t have one yourself but feel driven to tell a story that incorporates one can ask questions and get information that will help you tell it truly.

That’s all for this week – in the next couple weeks I’ll talk about the initial diagnosis period, working and going to school, independence and family, friendships, and courage. If you’ve got your own story, or something you want to know about, let me know in the comments below!


4 thoughts on “Real Talk – Disability and the New Adult

  1. My little sister (ok she’s in her late 30s) was diagnosed with MS about 12 years ago. Her body also decides not to work so well sometimes and last summer she had trouble with her speech and simple movements. She went on medical leave from work, was put on steroids, and fought to regain her life. She managed to go on vacation (with me!) and climbed a mountain and canoed a river. Finally after changing medications and Dr visits, she is almost back and last November she walked 55 out of 60 miles of the Susan G Komen 3 day walk with me and our other sister, who is a breast cancer survivor.
    Thanks for this post. I was just pondering writing a NA that pulls from my experience with depression … after college, newly married, and jobless in a new state away from my family was a serious change that a lot of graduates might experience. It is important to get the stories out there so others know they are not alone!
    Keep living! Keep smiling! Keep writing!

  2. Here, here! I have Crohn’s disease, which means my digestive system attacks itself. My second novel, and last year’s nano, is an NA about a girl who wins a trip of a lifetime and guilted into going, but she has a huge comfort zone. Part of that comfort zone, I wrote her with Crohn’s disease, because I wanted to infuse my story and how limiting it can be to when you have a flare-up and a dependence medication, needing to know a bathroom exists close by, and a fear of trying new foods. It lends a lot to her character, and she feels more real. I, too, vote for more NA with disabilities!

  3. Living with a disability or chronic disease is incredibly hard. I didn’t realize how hard it would be when I was diagnosed with rheumatoid arthritis two years ago – I was just glad to have a name for what was ailing me and hopefully some ways to treat it. There are days I can barely move and days I want to sleep all day and days where eating more than my share of chocolate is perfectly fine. But I have good days, too, and I’m thankful for that.

    Living with disability or a chronic illness can definitely add another layer of experience to our fiction. I’ve never thought of writing a novel where my character suffers with RA, but I might someday. 🙂

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