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

How Can I Redefine Me?

redefine

I stopped looking at myself as “disabled” a long time ago. I am, however, quite comfortable with being a person with disabilities. A friend, fellow-client at Fidos For Freedom, Inc., and blogger, was the first person I ever heard use the words, “differently abled”.

I have to tell you that sometimes I’m really feeling my disabilities. It can make me discouraged and frustrated. So many of us who live with disabilities or chronic illnesses often gripe, “I’d like just ONE DAY of feeling normal”. 

I’ve become very comfortable with being a “hearing again”, cochlear implant recipient and “late-deafened” (without my technology). I’ve even grown accustomed to having a vestibular disorder (Meniere’s disease). I use a cane, have a service dog, and bedazzle my cochlear implant with some amount of pride and transparency.

One thing I’m not OK with is concussions. I’ve had a lot. I was even told I had “post-concussive syndrome” after a moderate concussion in 2013. “You know… like football players have.” But…

I don’t play football.

My neurologist had me do ten weeks of vestibular rehab. This was actually a fantastic experience and I learned all kinds of tricks, most importantly how to fall safely – cuz I’m going to fall. Sure, I learned all the great things to minimize the possibility of falling, but I will take some tumbles. So I learned how to unlock my knees and SIT (albeit without any grace) to avoid falls. In spite of this, stuff just happens. And you know what? I get mad.

March 8

Take March 8th for example. There was some ice and lingering snow everywhere. I prepared to walk – which means I had my no-slip boots on, my tripod cane, and service dog (who is off vest but heels like the pro she is). I bundled up and made sure my charged cell phone is in a buttoned down pocket. I don’t use my cell phone while walking. No ear buds or attachments either – No listening to music. I pay attention when I walk. (Well, I also talk to my dog but that was the topic of another post).

So when I crossed a street and fell backwards on the ice I actually felt MAD on the way down. I had taken all these precautions! The back of my head actually BOUNCED on the road. Right before I blacked out I thought…

THIS SUCKS. 

I wasn’t out very long (I rarely am). I suffered with a headache for 4 days and made an appointment with my neurologist. (Follow up in May)

I remember thinking after texting my husband and making my way the rest of the way home, that I do not like being this person. I don’t like being the fall guy (get it?). By the time I walked the 2 blocks towards home, Terry met me and I sat on the porch for a good cry. After eliminating some of that tension (and freaking my husband out), I sat there to think (and yes, hold ice on my head). I kept thinking, “This isn’t who I am. I am not the walking, talking concussion waiting to happen. I have GOT to get a handle on this.” I needed to redefine myself. I’m NOT a fall guy. I’m a very careful person who sometimes sits quickly. I sit when I’m lucky… and when I’m not that’s OK. I have plan for that, too. I’m thinking a hockey helmet when the roads and walks are bad. Imagine how I can bedazzle THAT.

Your Thoughts Matter

Two hours before my fall, the pastor of my church (Weem’s Creek) spoke about courageous faith. Do you know that people with disabilities and chronic illness are some of the most courageous people I know? Here are some of his main points. If you aren’t a person of faith, read on anyway. This can easily pertain to anyone. If you are a person of faith you may be like me and think, “Well why have I never seen this before?”

1. To live a courageous faith, we must cultivate a habit of thinking thoughts that are from God. Instead of focusing on not thinking wrong thoughts, we need to focus on thinking right thoughts.

2. We can’t always control the thoughts we have, but we can control the thoughts we hold. We need to learn to hold the thoughts that are true, noble and excellent… those from God.

3. Meditate on God’s Word, not on our misery.

I think ATTITUDE is the real disability. If you can change your attitude, you will never feel disabled. Change your attitude – and that new attitude will CHANGE YOU.

I think of it as redefining me – redefining what having a disability means. My focus is on what I can do. I pour energy into discovering how to do things that I want to do – perhaps differently (using canine, technology, or assistance). This keeps our disabilities from defining US.

Be careful to acknowledge that everyone has a personal “definition”. Just because you may have a hearing loss too, doesn’t mean we define who we are the same. Being in control of our own definition (even if we need a necessary “redefine”), also helps others see us how we see ourselves.

It may take some work. I have a colleague at work who constantly tries to “help”. I finally told her one day, “watch how I do things WITHOUT your assistance”. That shut her up, made her watch… and don’t you know she learned so much? She told me later she just assumed I needed help. Having a disability does not mean you are “not able”. Most of us find very unique ways to be VERY abled.

Are you at a point in your life where you need a little redefining? Perhaps you have believed some of the “hype” about what you cannot do because of your diagnosis. Redefine yourself and hopefully change both your attitude and how others see you.

redefine4

 

L. Denise Portis

© 2015 Personal Hearing Loss Journal

 

Accepting Help ≠ Dependence

This service dog took full advantage of a holiday vacation in Florida.
This service dog took full advantage of a holiday vacation in Florida.

My Christmas holiday was a blur. They can be that way sometimes. I flew to Florida with my husband to be with my parents for Christmas, but I had a TON of homework. Chloe, faithful service dog, at least got the opportunity to really chill out. When I got home, I headed to an academic residency for 4 days.

Even being super busy, I still learned a few things. I learned some things about myself, about other people, and about acceptance. I began to lose my hearing and balance at the age of 25. Now that I am 48-years-old, you would think I have learned all that one can learn after living with hearing loss and a vestibular disorder for 2+ decades!

Ungracious Acceptance

Acceptance of my life as it is, seems to be an ever-evolving concept. Sometimes I take things in stride. Progression of the toll my diagnoses have, a new “timber – down goes Denise – fall”, having to switch out cochlear implant batteries mid-conversation, taking the elevator instead of escalator or stairs, and having to wait for an empty handicap stall in public bathrooms so that my dog and I BOTH fit, is really second nature for me now.

But sometimes? Sometimes I am WITCHY about it. (Feel free to put another first letter there as it probably fits from time to time). Maybe it’s hormones? Perhaps it is a lack of sleep? It may be I just had an unpleasant encounter with someone who was condescending towards me when my being differently-abled became apparent. For whatever reason, at times when someone asks if they can assist I must look…

S c A r Y

I assume this because their eyes get big, they throw up their hands in an “I surrender!” pose, and they take two full steps back. I don’t MEAN to put off that vibe, but I know there are times I must do so. I work SO hard at being independent. I love the color purple, but that isn’t why I carry a bright purple cane. I love dogs, but that isn’t why my 24/7 partner is a service dog from Fidos For Freedom, Inc. I love dangly earrings, but I don’t wear “bling-bling” on my cochlear implant because I’m a drama queen.

(OK, OKAY! I’m a drama queen, but in THIS instance it is not why I have bling-bling on my cochlear implant! Yeesh!)

I do all of these things to be independent. I yearn for independence and inner strength. I forget sometimes that the latter is the result of a “thinker” and “feeler” in sync in the body of a person who is differently-abled. Part of it, I actually HAVE caught the exasperated looks on faces when I do ask for help with something. It can be fleeting, but it’s there. I’m deaf, not blind. (We can debate if differently-abled people are far too sensitive about this and see things that are not there later).

Yeah, so? Let’s Go!

While in Florida, amidst homework and research, I did insist on going out to eat every day. I did a little bit of shopping at a place we don’t have in Maryland. Bealls was a very cool place! We also do not have a Belk. So yup. I did a little shopping.

When we went out on the town to do these things, we had to borrow my parent’s car. It is a big ol’ SUV and Chloe had to sit in the back compartment. It gave her plenty of room to stretch out and seemed like a great option for four people plus one service dog. The problem was that my parent’s SUV sits very high. Chloe is 10+ years old. She is retiring in May of 2015 (unless she lets me know it needs to be before then). The first couple of times I gave the “Chloe… OUT” command, she jumped from the back, only to have her front legs collapse and do a hound face plant in the parking lot. The first time it happened, I gasped. The second time it happened, I’m pretty sure I yelled. OK, yeah. I don’t yell. I have a hearing loss. I SCREECH. Ask me to demonstrate sometime, but bring the ear plugs.

Because my husband, Terry, didn’t want to see what a third time would trigger, he suggested, “Let me lift her out of the back and set her on the ground!

I said, “Ok, but do it in a way you don’t embarrass her. Make it quick and don’t make a big deal about it.

Perhaps I should explain that I disagree with those who say that dogs don’t exhibit or feel some of the same things humans do. I have seen dogs excited. I have seen them pissed. I have seen dogs pouting (do I have some stories about my grand-dog, Pegasus, or what?). I have seen dogs embarrassed. Point & laugh and dogs will duck their heads in shame/embarrassment.

Chloe’s weight ranges from 59-62 pounds. Needless to say, we don’t carry her around. I wasn’t sure how she would respond to being lifted from the back and set on all fours on the pavement; nor, did I know how she would respond to being lifted up into the back of the SUV.

The first time we opted to lift the service hound out, I held my breath. Terry reached into the back, hooked his arms under her and locked his hands over her spine, and carefully picked her up and set her on all fours.

PUH.

I exhaled rather noisily, and watched as she wagged her tail and moved to heel position, looking up at me as if, “Yeah, so? Let’s go!

I was stunned. I had a treat in my hand to cajole her back into a good mood. Instead I went into the store as if nothing out of the ordinary had happened. I watched Chloe from the corner of my eye. (Ummm… explain to me how oval shaped things like eyeballs have corners?) I digress…

I fully expected Chloe to act, I don’t know… WEIRD for awhile. However, she took it all in stride. She needed the help, being rather fond of her own face, and didn’t even miss a step in going on about her job after accepting assistance.

Do you know where I’m going with this?

WHY???????

Why do we act so weird when we need help? Maybe it is just a little help.

… like picking up the dropped blue tooth device I spotted in a hallway that I could not bend to get, and didn’t want Chloe to destroy by enthusiastic fetching.

Maybe it was a lot of help.

… like helping me dislodge my wedged rolling briefcase from the elevator door as it was stuck solid. I struggled with my butt holding the door, cane braced, and dog freaking out as I tugged on a very STUCK wheel.

Sometimes? Sometimes, we just need a little help to continue doing our thing. We need a helping hand. We aren’t signing an I.O.U. If we truly want the world to be a kinder place, then why are we prickly when someone asks if they can help? By accepting help we are not sticking a “I’m WEAK” note on our forehead. We can accept help and still be independent. We aren’t waving all rights to an independent life should we accept help once in awhile. For most people, helping another is done so with no strings attached. They don’t even think twice about it. They may never think about it again, while WE sit there perseverating on it and making a huge deal about it. Why can’t we just say, “thank you!” and our attitude be, “Yeah, so? Let’s go!

PRIDE.

Pride can be a good thing. There are good types of pride, and crippling types of pride. Learn the difference. Learn to accept help. It doesn’t mean you are signing on to a life of dependence. It means that you are SMART. You know your limitations and are making wise choices to do what is best for YOU. Face plants on the pavement aren’t fun. All you will have for that type of stubbornness is a skinned chin. (Ask Chloe…)

Denise Portis

© 2015 Personal Hearing Loss Journal