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

Point of View

Black squirrel 2/1/2010

I snapped this picture of one of our black squirrels in between snow storms. Squirrels can be funny sometimes. This pregnant female was eating old bread that I had put out for them, when she paused to look at me as I appeared with the camera. It sometimes makes me wonder who is watching who? For whatever reason, she certainly thought I was interesting!

Look at that animal on the other side of that glass. They live in such a strange cage! What is that thing in its hand that keeps making flashes of light?” Yeah, the squirrel’s point of view would be interesting to know. Unfortunately, I’ve not successfully interviewed any squirrels lately.

Change in Point of View

I had a dog’s eye view of the world this morning. My Meniere’s kicked in with a vicious reminder that I have a balance disorder. I was extremely wobbly and had a couple of tumbles. I ended up sitting on the floor with the dogs for awhile. (Not as far to fall, ya know?) Seeing things from a “dog’s eye view” was something I do not always experience. I sat on the floor enjoying my green tea with Chloe snuggled close. (For ya know? There is only ONE reason I would be on the floor… and that would be to spend one-on-one time with her!). My goofy Norwegian Elkhound was so excited to have me down on his level. He kept running to the family room to grab a dog toy to bring it back to me. He would detour underneath the heavy dining room table to better navigate the chairs that are rarely pushed in as they should be. Since I was sitting there on the floor, I could see up under the table. One long strand of my daughter’s hair hung from one of the bolts. I could see two large oval places in the carpet where the dogs park themselves under the table during meals. (This lent clear evidence to the fact that when my son vacuums on Wednesdays, he does not do underneath the table! GOTCHA!). Everything looks different from about three feet from the floor. My husband came through the room and I had to look up at him to talk. Dogs always have to look up, don’t they?

Of course “point of view” does not literally mean sharing the same VIEW as another physically. The phrase itself means the mental position of considering something such as an opinion, a story, theory, or suggestion of another.

What Shapes Your Point of View?

Rarely will two people have the same point of view on every topic. Your point of view is often shaped by your life experiences. I’m taking Multicultural Psychology right now, and it took my class nearly a week to agree on a definition for culture. It use to be that a person’s culture had to do with your genetics, race and ethnicity. The field of psychology has been forced to re-define what a culture group is as obviously far more influences the development of an individual than their genes, race and ethnic background. Religiosity, gender, socioeconomic status, disability, sexual orientation, politics, victimization, education, war, natural disaster and much more will affect a person’s development and evolving point of view.

I think it is important to understand what has shaped your own point of view. For one thing, this introspective activity is bound to make you more aware of how the people in your life have a different point of view because of their culture groups. Some psychologists call this broadened definition of culture a new word… sub-cultures. A family can have a number of sub-cultures even within the same house. My husband and I still have both children living at home right now. Believe me… a 19-year-old boy and a 20-year-old girl have different culture groups than my husband and I do. Their very AGE sets them apart from us and provides unique challenges as we navigate living together peacefully in spite of our differences.

At work, I am the only person who has a disability. Thankfully, after working there for seven years now, no one actually treats me like I have a disability. Because I have Chloe now too, they know that she is helping me. As we maneuver up and down the dangerous staircase each school day, they don’t stand and watch with a catch in their breath waiting to jump in and help. They know Chloe can get me up and down the stairs safely. My students no longer crash into each other trying to reach a paper, pen, eraser, or book that I drop in the classroom. Instead they smile and watch Chloe hop up to go retrieve the item for me. (Although many times they are smiling because Chloe has to stretch/yawn first before jogging over to assist).

I absolutely believe that people with disabilities are their own culture group. You may not even have the same disability as another person, but there is something unique about living a life WORTH LIVING in spite of a disability. People with disabilities have unique ABILITIES. It changes your point of view.

What is unique about YOU? What has helped to shape your point of view? Have you ever identified your culture groups? I think that by fully realizing all your OWN puzzle pieces, it makes it much easier to see the completed picture puzzle of others. It helps to keep us from focusing on one confusing, annoying puzzle piece. All the unique puzzle pieces combined make one beautiful person.

Denise Portis

© 2010 Personal Hearing Loss Journal

“Cane” Shopping

I’ve been a little depressed the past week or so.  I took a pretty bad fall a “rainy weekend” ago, and had to follow-up with my doctor to make sure I hadn’t broken a leg, arm or rib.  I was covered in bruises for a couple of weeks.  I mentioned to my husband, that I noticed that if I use my umbrella on the right side (with Chloe in heel on the left), then I do much better on rainy days.

Falling doesn’t make me depressed.  Bruises don’t make me depressed.  Mentioning “it may be time for me to get a cane for rainy days”, and darling hubby jumping all over it?  That made me depressed.  I said it half in jest, but he was completely serious.

I’ve been falling all my life.  I was one of those “accident prone” kids. I even remember one time in college, my RA told me, “Denise, you fall and run into stuff more than anyone I know!”  What is interesting to note, is that I didn’t have a significant hearing loss in college.  I only had a moderate unilateral loss due to a pedestrian vs. vehicle accident at the age of six.  (The car won)

I didn’t begin losing my hearing (sensorineural hearing loss) until I had a couple of babies at the age of twenty-five.  The hearing loss continued in both my ears for over a decade before I did anything about it.  All the while, I continued to “fall and run into stuff” a great deal.  It’s never been strange for me to be sporting bruises.  (The “ATTIC STORY” has become rather infamous!)

Somewhere along the way I developed a mild form of Meniere’s disease.  Without my cochlear implant and/or hearing aid, I have constant tinnitus.  But it is “manageable”, and I’m quite accustomed to the constant ringing when I’m not utilizing technology and bionics to hear.  I sleep very soundly “in spite of”.  Along with the tinnitus, however, I began to have vertigo and other balance problems.  It is worse when it’s a rainy day, so I know the weather affects it.  There is very little one can do for Meniere’s.  I cut down on salt, take Manganese tablets, and try to get a lot of rest.

Regardless, on rainy days I have to move carefully and methodically.  Chloe acts as a great counter-balance on stairs, ramps, inclines, slopes, etc.  However ceiling fans, fast moving bodies (like students running), or loud noises make the dizziness worse.  I face a flight of stairs “round trip, each school day.  I would think the stairwell is about 8 feet wide, but it is DEEP and STEEP.  Just standing at the top of the stairs and preparing to descend, the whole stairwell starts to spin, and I lose a great deal of my peripheral vision due to the vertigo.  It can be terrifying, but I’m confident for the most part and Chloe certainly adds stability.  On rainy days, however, you can multiply that terror times TEN.

If I happened to fall down THOSE stairs, there is no doubt I would break something.  It’s not that I’ve never broken a bone before!  My word, I’ve broken a femur, toes, fingers, my sternum, and cracked multiple bones as well.  But I’m rather terrified of that stairwell.  Perhaps it’s because I’m afraid I’ll hurt Chloe.  Perhaps it’s because I know how it would completely freak out the director of my school!  (grin)

To humor hubby, I’ve done a little “cane shopping” online.  At least some of them are pretty.

But darn… I’m depressed!  I find myself asking, “Has it come to this?”

But you know what? I can’t sit around feeling sorry for myself very long. I was taught to “belly-ache if you must”, but then recall how blessed you are!  And truly… I am very blessed.  With my cochlear implant I hear better than I had ever hoped to “this side of Heaven”.  I have a wonderful and supportive family, and a super assistance dog who loves to work.  The blessings FAR outweigh my little problems with balance.

I have learned to poke fun at myself when needed, and it has certainly made others more comfortable around my implant, assistance dog, and even dizziness.  But I really hate falling…

For now I’m “in shopping mode”.  At least they aren’t very expensive!  At least I’d only need one when the weather is bad.  At least some are pretty!  I could add a whole list of “at leasts”! I suppose that’s a form of counting your blessings.

For now, I’ll just “window/monitor” shop. At least… until hubby brings it up again.

Denise Portis

© 2008 Hearing Loss Journal