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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Embracing It!

"So... tell me the truth. How does this look?" (Terry) "Baby? You are rockin' that helmet!"
“So… tell me the truth. How does this look?” (Terry) “Baby? You are rockin’ that helmet!”

I believe that there are very legitimate reasons for people who choose to keep invisible disabilities invisible. I respect their choice and their reasons for doing so. In many circumstances, it makes “good sense” and isn’t at all about vanity or shame.

I am “all out there” for lack of a better way to put it. In my profession, in my life, in the community service arenas I’m involved in, and for personal safety reasons, making my invisible disabilities – visible is the right thing to do.

I wear bling on my implant. I think it is fun. It puts a smile on my face. I’m so SO thrilled to be hearing again. The progression of my hearing loss took 12 painful years. I was completely deaf for almost two, silently researching and investigating cochlear implants. I’m so proud to be hearing again. Some say I’m flaunting it. Ummm…

YEAH.

If you do not want to bring attention to disabilities, do not ever choose to be partnered with a service dog. Even though our dogs are taught to be nearly invisible (and don’t you know folks are always startled when I get up to leave restaurants because they had no clue my dog was there?), when you walk through a store or into a doctor’s office, your service dog will bring attention to the fact that “something is different about you”. It has been a very long time since working dogs were only trained to be guide dogs. There are diabetic alert dogs, seizure alert dogs, autism dogs, PTSD service dogs, mobility assist dogs, balance assist dogs, alzheimer assist dogs, hearing assistance dogs, and the list goes on! My service dog makes me more independent. I don’t have to ask for help nearly as often. I don’t miss things (sounds my CI won’t pick up), and I’m confident and more safe. But choosing to have a service dog will bring attention to you.

When my Meniere’s disease worsened, I finally realized that 3-5 falls a week were too many. When I have my cane, I stumble maybe 3-4 times a week, but rarely go all the way down. I average only 2-3 falls a month now. I have three canes. They are bright, bold, and beautiful. I don’t try to hide that I carry a cane with me.

I love to be outside. Perhaps it’s the “farm girl” in me, but I love to be outside and love to walk. Just because I have a balance disorder does not mean that I am going to stop walking. Yet… I seemed to have trouble doing it safely. Even with cane and service dog, I was still taking tumbles when the roads or sidewalks were bad. Winter is my favorite season. I love snow, love ice, love “visible breath” in the air… but I have had some bad winters, 3 years in a row. As a matter of fact, when perusing my medical records with my neurologist, I was averaging 2 concussions each year, usually in Winter months. My last mild concussion was March 8th. I have a follow up with my neuro the first week of May. At the last appointment, he said, “You know. You need a helmet for when you walk!”

I laughed and said, “all my friends tell me I need to be wrapped in bubble wrap or need to wear a helmet.”

He looked at me eye-ball to eye-ball and said, “You don’t understand. I’m being serious. You CANNOT continue having concussions”.

Oh.

OH.

NO FREAKING WAY!

I sat there a little stunned for a minute but then began to consider the possibilities. I’m not afraid of what people think. I don’t care about what is fashionable – heck I consider myself a “disability-advocate fashion expert”. But could I embrace a helmet for walking when road and sidewalk conditions were bad?

I decided that yes… Yes, I could!

So I started researching, (cuz, yeah, that’s what I do) and found the helmet I wanted. I was crazy ecstatic that it is called a … “Brainsaver“! Ain’t it great? *BEAMS*

Triple 8 Brainsaver Rubber helmet with Liner in Rasta Yellow
Triple 8 Brainsaver Rubber helmet with Liner in Rasta Yellow

I blinged up the helmet with some of my favorite stickers, (I’m a nut for daisies), and now I’m all set for walking. I even fixed the liner where my cochlear implant magnet had a little place to “rest” inside so it would not get pushed off.

I realize my approach to MY LIFE may not work for you. However, I love embracing who I am and holding my head high. I want to be an example to others, but I certainly know and understand that it is “different strokes for different folks”.

I hope I can report this time next year that I haven’t sustained any new concussions. Yay for me, and yay for neurologists who push to get their patients to take their brains seriously.

Denise Portis

© 2015 Personal Hearing Loss Journal

Round and Round She Goes, Where She Stops…

… is USUALLY on her nose.

If you live with invisible disabilities or chronic illness, have you ever stopped and tried to make sense of it all? More often should I choose to do this, I find it simply doesn’t make sense. What can be more difficult, however, is trying to help someone ELSE understand what it is like to be a little “different”.

The words disability is a like a nasty tasting curse word to many. Personally? I’m not afraid of the word because it does currently define my rights under the ADA – something I wish wasn’t necessary but is in order to make sure that those who navigate life differently have the same access and rights as everyone else. I’m not here to today to discuss the WORD, however. I am here to bellyache.

A friend of mine posted a link to a terrific article currently taking up space at Invisible Illness Awareness Week. It detailed why it is important to just LISTEN sometimes. You can access the article HERE.

I belong to a number of online support groups for people with Meniere’s disease. I’ve never met anyone with symptoms exactly like mine. As a matter of fact, Meniere’s disease often frustrates perplexed physicians who are trying to help treat the disease. However, because there is no cure, one can only learn to manage and treat the symptoms. What may help one person, does not help another at all.

My assistance dog, Chloe, from Fidos For Freedom Inc., is a big blessing. Originally trained to be a hearing dog, she still performs all her hearing alerts with finesse and enthusiasm. As a matter of fact, 7 AM came WAY to early yesterday morning when my alarm went off. I tried to tell her to go back to bed and stop kissing my hand, elbow, and right ear. My husband rolled over and said, “Hello? Your alarm is going off!” Oh.

But Chloe actually helps me with far more balance related tasks each day than she does hearing alerts. I tried to “track it” one day and she performed 17 hearing alerts (alarm, kitchen timer, automatic retrieve of items I’d dropped and hadn’t heard, door knock, and cell phone ringing) and over 40 “other” tasks. (I quit counting after 40). These usually consist of directed retrieves. I drop things. I drop things a lot. Picking them up myself takes time as a bend all the way to the floor often precedes a fall. To avoid that, I simply let her get them for me. She also acts as a steady brace when I stand, sit, or go up/down stairs. She also acts as a brace if I begin to weave in a large cavernous place. The picture I chose for this post reminds me how bad my visual field was on Saturday. I ran into the mall with my husband to pick up something at a favorite store. When sound echoes, I tilt. (Picture Denise, aka Leaning Tower of Portis). Chloe has a large handle on the top of her vest that works perfectly. On my lower left is a solid helper that keeps my world from being quite so off center. I’ve been in JCPenney before and let go of her handle to look at some clothing on a sales rack. I immediately felt “swishy” because of the tall ceilings and lights. I grabbed out to keep from falling and clutched the breast of a nearby mannequin. I don’t make these things up. Thank goodness she/it wasn’t real, right?

Yet there are things Chloe cannot help me with, too. Here are some things about Meniere’s disease that surprise some folks:

1. Scrolling words or moving backgrounds on PowerPoints make me sick.

Our church places the words to songs and notes for the message on the walls in the sanctuary. This is very helpful for anyone with hearing problems… or ADHD (smile). However, sometimes there are moving points of light or star bursts that move behind the words or notes. I’m fine as long as I’M SITTING.

2. I have to sit to brush my teeth.

Yeah. I know, I know! Strange! But there is something about moving a toothbrush around in my mouth while in a standing position. I have to sit, and there are days I actually have to close my eyes on top of that!

3. Stepping down can be problematic.

This one really bugs me. On sunny days (weather is a trigger for me), I love to hike and climb around. I love rocks. Big rocks. I love heights (believe it or not). However, stepping down more than 6 inches is enough change in my altitude that I black out. It may only be for a few seconds, but if both feet are not on the ground, I’ll be picking blades of grass out of my nose hair. Chloe has learned that a “Whoa!” from me means

Move.

NOW.

4. Must… AVOID… looking… at ROTATING things (gasp)

Ceiling fans are not my friend. Neither are signs hung from ceilings when the air conditioner vents blow on them to make them twirl. For me this means heave, deep breath, heave again. I’m serious. 🙂

5. I shower while looking at my feet.

I didn’t realize how difficult it can be to get clean when you can’t look up at the shower head. Raise your eyes to reach up for shampoo or your razor? Honey? Do you want to get up close and personal to the DRAIN? Heaven help the family member who moves my shampoo or washrag from their designated place. I count on where they are so that I can shower safely… while looking at my chipped toenail polish.

6. Watching the effect of the wind can topple me too!

We’ve had some terrific storms lately. Since it has brought much needed rain, I’ve been loathe to complain. I love standing on the deck and watching the wind blowing the towering pines behind our home. Clarification: I like hanging on to the rail of our deck and watching the wind blow the towering pine trees behind our home.

7. Gingery’s Baby Pegasus can be mesmerizing to my detriment.

My daughter’s 12 pound hairless Chinese Crested likes to spin. For fun. Imagine that. It is quite captivating, but it only means CAPSIZING for me. “Look away, Denise, Look AWAY!”

8. I fuss at my son’s stomach.

My son… you know the one who was 7 weeks premature? He is 6 foot 3 inches tall. He’s a terrific kid. However, even at 21-years-old, he still needs the occasional “mama sermon”. I dare not look up, Up, UP into his eyes. One isn’t able to reiterate needed reminders when flat on the floor. Instead I point my finger and give his belly and chest “what for”. The kid laughs at me. LAUGHS. (sigh)

9. Glass elevators have speckled carpet.

I know this because I only see the carpet in glass elevators. Why not solids? Stripes? Only speckles. This confuses me.

10. I remind my doctor that I will NOT hold my breath while he’s listening to my ticker.

Because… well otherwise I’m waking up with nurses, hound dog, and doctor crowded around. (Why crowd someone who has swooned? Can I just ask that?)

Like many people who get up every morning and “manage” their symptoms, I hope perhaps I’ve helped you understand balance disorders a little better. Feel free to share your own “management techniques”.

Denise Portis

© 2012 Personal Hearing Loss Journal

Kidney Disease and Hearing Loss

Recently, I read a blog that mentioned kidney disease and hearing loss. You can read the post HERE.

My husband, Terry, and I have been married almost 26 years. He was born with only one kidney, and the one he has doesn’t work ideally. Because he has always lived an “alcohol/drug” free life, he is in good health considering!

I have noticed, however, that he has started showing signs of hearing loss. It started with the television. We “TIVO” everything so that we can watch favorite shows when we have time to sit down and watch them together. In recent months, I have noticed that HE is asking me to turn the volume up. I’ll let that sink in for a minute (grin). I’m deaf. Sure I “hear again” with a cochlear implant, but HE is asking ME to turn up the television. He usually has the remote that fast-forwards through the commercials (as I seem incapable due to vertigo in watching the screen and trying to hit buttons). I have the remote that controls the volume.

He is also saying “huh” more. I’ve noticed it at the dinner table and also in restaurants. Granted, both places can be noisy environments, but it has been a bit of an eye-opener for me to be on the other side of that “huh?”

So as we’ve aged, my hearing has gotten better and his – not so much. I can’t say at this point he will need hearing aids, but I’m thinking the probability in the next 10 years is very high.

I want to be the kind of spouse he has been. Terry has been my biggest cheerleader, support, and source of encouragement. It can’t be easy to be married to someone who is late-deafened when you fell in love with someone who could hear. He has shown me that what happens after “I do” doesn’t impact love, commitment, or a shared life. He hasn’t let it phase him that I have a balance disorder. He picks me up if I fall, brushes me off and helps me see the “funny” in it (as long there isn’t any blood). He encouraged and supports my having a hearing assistance/balance assist dog from Fidos For Freedom. He now actually serves on their board.

So if my husband with kidney disease DOES lose his hearing? I’ll be there for him too. In the meantime, I am helping him navigate living with some adjustments regarding VOLUME.

Denise Portis

© 2012 Personal Hearing Loss Journal

Link to story in Wall Street Journal:  Click HERE.

 

Something’s Missing…

My daughter was about 75% finished with this Thomas Kinkade puzzle when she realized she was missing a piece!

This past week, my daughter realized she was missing a piece of a puzzle. In spite of this, she stubbornly completed it. Her original intent was to frame the completed project, but after the missing piece was discovered she dejectedly took it apart and put it up. At least she didn’t let it get her too down… she went out and purchased a bigger, more colorful puzzle the next day!

Ever Feel Like Something is Missing?

We’ve had a tough month here in the Portis household. There have been some pretty major events that have taken its toll on us emotionally and physically. Terry has finally stopped having bad dreams at night, and my doctor is now  “on my case” as it ultimately disrupted my once regulated blood pressure. I was forced to make a medication change, and I see her again in two weeks. Basically this has NOT BEEN FUN.

When our children are little and something hurts them… chances are a “barbie doll band aid” or “spider man patch” was enough to make the “owwie” feel better. If their feelings were hurt, a simple pep talk and instructions to “shake hands and say you are sorry” sufficed. Having young adult children is no easy task. They are independent thinkers and for the most part make daily decisions with only occasional requests for advice from mom and dad. Kyersten will only be living at home full-time for another 8 months as she transfers to a 4-year college next August. Needless to say, I am “treasuring up” these days. Both of our kids work part-time and go to school full-time. They serve in our church and are busy. They are also old enough for life to hit them hard with tragedy and heart ache. As young adults, their “boo-boos” are more serious. It’s very difficult as parents seeing your child face their first “life changing challenge”. It won’t be their last, but it isn’t fun to witness the first and be helpless to intervene.

Perhaps because we’ve been experiencing some very real emotional duress, I have been “waiting for the other shoe to drop“. Have you ever felt that way? It may be that you’ve been through something difficult and even though things are looking up, you sense something bad is still going to happen. Perhaps it’s the result of living for a prolonged period of time under stress. I think we can get in the habit of feeling stress and pressure. Even when life begins to smooth out, we are in the habit of waking up tense. I can’t shake the feeling that something bad is going to happen again.

I wake up that way, and go to bed the same. This has affected even my tinnitus, balance and hearing! Stress and pressure only make acquired disabilities seem worse. Oh sure! This trial has brought me to my knees in a hurry. I believe in prayer and do not have to be coached to go to God when I need advice, comfort, healing, forgiveness or thankfulness. When tragedy strikes, I do have to remind myself… “GO PRAY”, because I’m often just trying to stay in one piece. S.O.S. prayers are harder for me… I guess because I’m already under stress and have little emotion or brain cells for doing something different.

Face toward Heaven... Chloe can set a good example

We just had a beautiful snow here in Maryland. We received 3-4 inches and it was the lovely, huge, fluffy flakes. Chloe and our family dog, Tyco, love the snow. Tyco loves it because he’s an Elkhound… a winter breed. Chloe loves it because it makes everything smell better. Being a hound-mix, she has a better sniffer… than even Tyco. Her muzzle, nose and floppy jowls were all made to collect and intensify scent. She can even smell a scent on the air and may taste and savor it by licking at the air with deep breaths and puffs! When snow is on the ground, smells are intensified, and she LOVES IT. She would spend hours in the yard if I could endure the cold that long.

Today in the yard, the dogs raced around the yard to play. While Tyco went to make his rounds along the perimeter of our fence, Chloe trotted around the yard, nose to the ground, sniffing and tracking all the wildlife scents left from critters in our yard from the early morning hours. She would trace many all the way to the fence and stop when she realized “it had gone over”. She would quickly pick up another scent, and race after it even if it sent her in circles, up and over tree stumps, or scrambling through the wintry bushes. Chloe was getting herself worked up over one scent trail, and I suspect it may have been something “bigger than normal” by the way she was snuffling, whining, and tracking. Eventually, she stopped her frenzied tracking and stopped short with limbs trembling and deep sighs. With the last bit of snow melting away between her footpads, Chloe turned her nose towards Heaven and stood in perfect stillness for almost 5 minutes. The only thing I could see moving was her nostrils and her ribcage. She even closed her eyes and enjoyed the scent of the air… of winter…

It struck me how poignantly clear her example was to me as her human partner. After a disappointing “hunt”, she was still able to enjoy what she was good at… smelling the scents of the winter bouquet caught up in the chilly breeze around us. I realized that although our family has experienced something that will always “show” as a heart scar in our lives, I cannot forget that life is usually VERY GOOD. I had to take a minute and point my own nose towards Heaven to express “thanks” for life and the blessings I have.

Get on Livin’ it!

Don’t allow yourself to look at life’s stresses and tragedy as the “norm”. To easily we embrace what we feel is our “lot” or what we deserve. Bad things happen… and they happen to every person. Matthew 5:45: “For He makes His sun rise on the evil and on the good, and sends rain on the just and on the unjust.” Bad things happen to good people. (Bad things happen to bad people too, but they are usually more of a life consequence than a random occurrence!) Don’t anticipate that bad things are going to happen. Life is good.

ready to come in?

Denise Portis

© 2009 Hearing Loss Journal

Happy Birthday Chloe!

birthday Chloe turned five-years-old on Thursday, October 1st. According to one source, that makes Chloe about 36-years-old in human years. No wonder she is perfectly fine with a Sunday afternoon nap now!

History in a Nutshell

Chloe came to Fidos For Freedom in January of 2005 as a three month old puppy. PC310044 Chloe was puppy raised by Linda O., who is a long-time Puppy Raiser for Fidos For Freedom. Chloe has an anonymous sponsor, however we have been blessed to get to know her as well over the years. Chloe’s sponsor has acted as such on behalf of numerous Fidos For Freedom dogs.

Chloe had two fantastic trainers. First she trained with Jolanthe W., and later with Pat J. Both were instrumental in helping Chloe to learn basic obedience, public deportment, and hearing alerts.

In January of 2007, I was matched with Chloe at a Wednesday night training. I’m not sure who had the happiest tail wag!

Chloe and I graduated from Fidos For Freedom at the Tux & Tails Gala in May of 2009.

I cannot imagine life without Chloe! Whether it is doing her job alerting me to sounds I do not hear, or retrieving dropped items so that I do not topple from the Meniere’s, Chloe is simply glad to be with me. She doesn’t even consider her job, “work”.

In honor of all those canine partners who assist their human with various tasks, I want to wish Chloe a very Happy Birthday!

Denise Portis

© 2009 Hearing Loss Journal