DiversifYA: Erica Chapman, part two
|November 26, 2013||Posted by DiversifYA under Disability and Illness, DiversifYA||
Guys, I’m so delighted to welcome back one of my wonderful CP and fellow YA Misfits to DiversifYA! Erica Chapman writes deliciously dark YA–thrillers and contemporary–and she’s genuinely one of the loveliest people in the kidlit community! She joined us a little while ago to talk about living with and surviving a heart condition, and joins us today to talk about Meniere’s.
1. How do you identify yourself?
Since I’ve answered this before, I’ll keep it the same. I’m a passionate person. A wife. A writer. A sister. A daughter/granddaughter. A friend. Someone who loves music. Someone who loves animals. Someone who loves helping people. A heart survivor and advocate. I wouldn’t say I’m someone who has chronic vertigo as something I identify myself as though. It’s just something I’m afflicted with.
2. What did it feel like growing up with Meniere’s?
First, I’m going to share what it is. Because I’m sure not everyone knows. Here’s the Mayo Clinic’s definition.
Meniere’s disease is a disorder of the inner ear that causes spontaneous episodes of vertigo — a sensation of a spinning motion — along with fluctuating hearing loss, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear. In many cases, Meniere’s disease affects only one ear.
I didn’t really grow up with it. I got it when I was around thirty. Kind of suddenly and out of nowhere. I had thought it was part of having my heart condition, but after I had heart surgery and still had vertigo episodes, I knew that wasn’t it. I went to the doctor and they diagnosed me with Meniere’s. They said that sometimes they are unsure if that’s really what it is, but told me they were sure with me since I had every single symptom. I had no idea what Meniere’s was, but I learned quickly. It’s difficult living with it. Although I’m lucky enough to only have isolated incidents, it can be debilitating with many who have it. My scariest moment was having an “episode” while driving. Luckily I pulled over in time, but needless to say I was traumatized. It’s kind of like having this ticking time bomb that can go off at any time.
3. What are the biggest challenges? Conversely, what are the quirks/perks?
Not knowing when and where you will have an episode. When it happens, and it happens a lot at work, I have to lie down or lean back in my chair and close my eyes. It looks strange to anyone who doesn’t know what it is. It can be scary. An episode feels like falling. The world just spins and spins for whatever amount of time. It’s really scary if you don’t know what it is. Now that I know, I get a few every few months and some days I call “dizzy days” where I can’t really do much but sit. I’m incredibly lucky to only get a few every few months (each episode is no more than a minute or two-I do lose hearing in one ear while this happens). Some people with this disease have it for hours and days.
As far as I know, there are no perks. It’s pretty awful. I suppose knowing what we have is important for treatment.
4. What do you wish people knew about having Meniere’s?
That it’s something we can’t help. There’s no cure and no one knows how or why it happens. We miss a lot of work due to episodes. After each one it’s pretty customary to lie down for a couple hours just to adjust back into life. It makes for strange work days if it happens there. I’ve had two instances where co-workers drove me home because they were concerned about me after an episode. I have an amazing team who understands my disease. Some aren’t as lucky.
5. What are the biggest cliches/stereotypes you’ve seen?
That we’re lazy or making it up? I’m not sure. I have had very understanding people in my life. But I can imagine someone who has episodes all the time would have a hard time keeping a job. They would most likely be seen as lazy. Why can’t they get help? Why does it only happen once in a while? That kind of thing.
BONUS: What is your advice for writers writing diverse characters?
Research and talk to people who can give you an honest opinion about your diverse characters. Don’t be afraid to try something new. No one person is one thing. Don’t let fear of getting it wrong stop you from trying it out. It’s better to try than not have any.
Thanks so much for inviting me again to this wonderful blog ;o)