SYTYCD

funny_dancer

We had a brief spat of rain this past week. When that happens I’m at risk for a “brief splat”. Folks? I think I’m more reliable than the Weather Channel. Seriously.

I’m like a human barometer. If it is going to rain, I know it. My vestibular system goes haywire, the tinnitus increases, and my world spins much faster than it normally does. So on a rainy day this past week, I was in class and took a very quick, very unwise turn from the whiteboard to face the class.

I actually have no idea why I didn’t fall. Call it luck. Maybe it was God. Perhaps I’m just THAT GOOD. However, just because I didn’t fall doesn’t mean I didn’t “bust a move”. As a matter of fact, it takes quite the “fancy footwork” to correct a near fall.

I stood there for a minute, with my arms stretched out to aid in my balance correction. I know my eyes were as wide as saucers. I actually heard my breath HITCH. (And if *I* heard it, it must have been VERY LOUD). I may not be able to move fast, but I think fast. I immediately thought, “Ok. How do I explain this? Do I cover with a counter-move?”

I pictured myself launching right into the MOONWALK, and prophesied I’d end up on my fanny.

I pictured myself STAYIN’ ALIVE, but this was long before THEIR time. Instead I decided to just lower my arms slowly and calmly say, “WHEW!”

A student in the front row nonchalantly said, “You should charge for that. Seriously. It’s that good”. Everyone laughed and the tension was broken. Professor Portis didn’t land on her face…

TODAY

How Do You Explain It Away?

If you have an invisible illness or disability that sometimes has your body doing things you wish it didn’t do, you’ve likely tried to think of ways to explain it to others when it happens.

I have a friend with a neurological disorder which causes her extremities to sometimes “twitch”. If she is fatigued and having a “bad day”, she may twitch very violently. I’ve learned to give her a little bit of space so that I do not accidentally get “hit”. I’ve known her awhile, however. Other folks who aren’t use to being around her, may experience a “near miss”. She cracks me up with her practiced come-backs.

“Duck!”

“You should see what I can do on a dance floor!”

These are coping mechanisms. Not everyone tries to laugh it off and poke fun at themselves. Some folks ignore it. Some folks just apologize (like it’s their fault? Wha…?) Some people don’t even try. They isolate themselves so that they aren’t put in a position to have to explain anything.

Kids. Expect it! They Are Curious!

Some of the best things ever said to me about my disabilities came out of the mouth of babes — children! I get so cracked up sometimes that it is all I can do to bend down to take the time to explain.

I’ll never forget when a kiddo pointed to Chloe in vest and asked, “Why does that dog have on a SADDLE?” 

Sometimes OTHER people help me out. They help me explain to children what is going on. The Costco I go to on occasion know me now simply because folks start recognizing my service dog. One day I was in the freezer section and had to pass a more narrow opening to the aisle due to two cooking stations set up at the end. My balance wasn’t great that day, so I decided to just hang on to the cart and walk on through. The Costco deli representative had better ideas.

“Here, you’ve got to try this. It is really good!” She stuck a toothpick in a piece of meat that she had just fried up in her Wok. I shouldn’t have done it, but I reached for that toothpick.

Yup, I almost fell face first into the Wok. The lady grabbed my elbow and continued to extol the virtues of the seasoned meat.

A child nearby exclaimed with horror in their voice, “Dad! That lady almost fell in that cooker!”

The Costco worker, without missing a beat, said, “No worries. I caught her. We’re not frying up that kind of meat today”. Everyone laughed and numerous folks moved their carts clear so I could get through with giant cart and service dog in heel. I wasn’t the least bit embarrassed. I’m glad when people can tell that I am comfortable enough with being ME, that I don’t mind a little humorous dialogue.

When to Accept That There is No Way TO COVER

Humor doesn’t explain away everything. Laughing at yourself doesn’t always succeed at helping others feel more comfortable. Sometimes, all you can do is state the facts and move on.

I am sporting a big cut on my left thumb. It is healing and my nail is finally growing back. I acquired this injury as the result of cutting an apple with a paring knife on a day I wasn’t being extra cognizant of the fact that I have peripheral neuropathy. I was in class the day of the “big cut”. A student asked, after pointing to the huge bandage on my thumb, “what in the world happened to your thumb”? I explained how I got my “boo-boo” and the student stated the obvious. “Maybe you should get someone else to cut your apple!” I laughed and agreed, but have to tell you… I was peeved for a minute. I mean, I work SO HARD at being independent! I can’t even cut my own apple safely. I was still in a peeved mood when I went for my neurologist check up that afternoon. This was a re-check after the March 8th concussion. It was supposed to be a quick “in and out”.

But…

I was still peeved. After checking everything out, I told Dr. S. “Listen. I’ve had vestibular rehab. I use a service dog. I have my cane with me all the time. I walk with a helmet now on bad weather days. I never wear socks. I alert family members when I’m headed to the shower. I don’t drive at night. I drop things all the time, and cheerfully allow my retired dog to retrieve things if she’s there, or without shame, ask for assistance when she isn’t. You’ve got to help me! I can’t even cut an apple!” I exclaimed while gesturing towards my injured thumb.

I’m sure Dr. S. has heard exasperated – even desperate demands for an answer all too often. He sat there a minute digesting all I said. I have a feeling that after all the tests have been run and all efforts at rehabilitation are exhausted, his response is at times, “I’ve got nuthin’

However, he got a lightbulb look on his face and turned to his computer. He typed something in and then turned the screen so that I could see it.

apple slicer

Ah. An apple slicer. I bought one at Target that very weekend.

If something is difficult for you and you need a “work around“, brain-storm with a doctor, friend, or family member. Perhaps there IS a way you can do – whatever it is you are having trouble doing – safely! I think asking for opinions help others  understand that you really are striving to be independent, too.

SYTYCD (A television show called, “So You Think You Can Dance“),

if you use humor to help educate and advocate,

if you speak in plain terms to help others understand,

or if you get a bright idea from another source… simply celebrate the fact that you found a new AND SAFE way of doing things. A positive attitude goes a long way!

Denise Portis

© 2015 Personal Hearing Loss Journal

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One thought on “SYTYCD

  1. You started your post exactly the way I feel today. It won’t decide if it is going to rain, but inside my vestibular system it is going crazy. I’ve had 2 full blown attacks today. I can’t hear worth a toot….yes, my CI’s go crazy often when my ears go crazy. and I love what your student said.
    I felt for you and your doctor when you stated so much you have given up and how hard you try to be independent. I walk with a walker. I’ve given up cooking, after way too may accidents (and I LOVE to cook), if I drop things and no one is home..it stays there, well now I have a grabby thing I can pick up some things with, so somethings I can get. 🙂 I don’t bend over. I don’t walk in the dark. I don’t shower alone. I don’t drive. the last time I picked a knife up out of the sink I almost cut my thumb off. so yeah, I got how you were feeling. I do believe in using any tool one can offer. Use anything I can. I do have a hard time asking someone else if they can think of something, because it simply doesn’t dawn on me that there may be something to help. Great idea to cut your apple. 🙂

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