30 November 2011

Writing With Meniere's Disease

by Carrie Bailey

This probably should have been the first article I wrote, because I know more about living with vertigo and hearing loss than I do writing. How? I've been a writer for 2 years and I've had balance issues for 17 years. If you've never heard of Meniere's disease, take a quick moment to add "Meniere's Disease" to your list of things-in-life-to-be-grateful-haven't-impacted-you. If you have, I'll tell you why Meniere's might not be as bad as it absolutely truly is...especially if you're a writer.

Meniere's is like if you're one day going about your own business and an invisible rollercoaster suddenly picks you up and starts spinning you around. While you can't get off for 24 hours or more, everyone around assumes you've been at the bottle or suffering from a case extreme laziness and may even resent you for it! Then, at times, the same man operating the rollarcoaster fills your ears are filled with invisible bells and cotton. Try as you may to explain yourself and wish it were easier, you must adapt your life to your condition. The doctor and the specialist have no cure to offer and the search for alternative medicine is mostly just searching puncutated by brief bouts of enthusiasm over the placebo effect.
I wouldn't be a writer if I didn't have Meniere's Disease
It's true. I was busy working up the courage to skydive, but after I developed the disease, I had time to discover a hobby that quickly became a passion and then, a way of life. Anyway, here's what brought me from frustration to finding an activity I love almost as much as drinking coffee:

Give into despair (for a time): Don't let anyone tell you that you shouldn't focus on the negative aspects of hearing loss and balance disorders. In the end you will benefit from the process of grieving certain abilities that you may never know again, but allow it to be a personal process. Read about the 5 stages of grief in between vomiting episodes. Get angry. Get sad. Come to the point of acceptance that there is no cure right now or be unreasonable and refuse to for a time. While only other people who have the disease may truly understand, others don't have to. We're all different in our abilities...yours may have changed. You have a right to feel strongly about that.

Change your strategy: Change doesn't imply lowering expectations. During dizzy spells, after falls and admid the anxiety and confusion created by the random attacks, your ability to write can only be improved by the struggle. You've been handed inspiration. You must be a writer and a fighter. You've got to fight for your right...to write? Yes. An improved stragedy may include flexible deadlines, whether personal or professional. It may be that during an attack when you're too sick to read and cannot hear properly, you have time mentally process your work-in-progress. Probably, you can use a tape recording device to take notes, if writing by hand or word processor is out of the question, as it often is.

Use your experience to your benefit: While fighting a difficult disease like Meniere's, your range of experience is expanded. You may know grief, physical disability, vertigo, working with the medical system, difficulties communicating with friends and loved ones, anxiety over unpredictable disasters, aging, having your ability isolate you... All of these experiences are valuable refrences to draw from when writing creatively. Whether you imagine you are alone in the woods on a rite of manhood or expecting an earthquake or on a spaceship working with an untreatable alien plague, everything has potential. There's nothing boring about the condition, use it to your advantage.

I know some people might want to promote me to Captain Obvious and find it offensive that I make the claim that this can be done or is worth doing or that a person suffering with Meniere's couldn't figure this out for themselves. Incurable difficult to treat diseases are something everyone copes with differently and experiences vary. My intent in sharing my advice is just to say, "Hey, this is what I did."

I remember meeting a librarian with Meniere's years ago when my symptoms were at their worst before I discovered writing articles and fiction. He inspired me. Of course, he was a crabby old man, but I am currently studying at a Master's level for librarian work. I also recall a tattered magazine with an article about a body builder with Meniere's. I'd never even heard of the disorder before, but there she was all buff and oiled in a hot pink bikini. I knew immediately I never wanted to look like that, but it challenged me accept what that if other people can continue thriving... I could. So, this is my story. I'm a writer. And I'm grateful for each health problem that has helped me discover my second greatest passion in life (behind coffee).

1 comment:

  1. Hi Carrie. This was a great post. You describe what Meniere's feels like so well. When it first happened to me, it was exactly the same. The spinning was horrendous. It was the weirdest thing. I also write but never considered skydiving.