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

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Walk a Mile in My Shoes

Gonna change directions here today as the death of Whitney Houston coincides with something I am seeing more and more in the disability community.

It doesn’t matter whether or not you like Whitney Houston. What I am disappointed to see is some of the comments and “hatin’ on” this artist since her death. I actually saw on one person’s Facebook that drug addicts and alcoholics get what they deserve. “Someone with so much talent shouldn’t have wasted it”

Wow. I mean REALLY?

Unless you were thrust into fame and fortune at a relatively young age…

Unless you had to deal with the media on a daily basis, giving up any hope of privacy…

Unless you married for love and were crushed by disappointment…

Unless you raised a child as best you could in the backdrop of an industry that can be unforgiving…

Unless you developed an addiction because of life’s crushing problems and entered rehab while the whole world knew it…

Unless you made mistakes and fell back into bad habits – all while the whole world watched…

… then keep your mouth shut about Whitney Houston.

Why Does This Upset Me? Why Should it Upset YOU?

Anytime people begin to criticize and judge someone else a change takes place. Amnesia.

I rarely hear someone criticize and judge someone who is just like THEM. It usually happens when someone is different than you are. Criticizing is easy when we don’t walk in that person’s shoes. Judging is a simple task when we cannot hope to understand what really caused someone to do something when they are different than we are. We forget all the times we have been hurt for being judged and criticized by people who do not understand our own choices in life.

Wanna get me ticked off? Criticize and judge someone who chose to mitigate their disability with a service dog when you don’t live with a disability. Sometimes even others within the disability community may scratch their head and wonder why a person would choose a service dog when “they have the same disability you do”. What they may not know is that there ARE various differences between your disabilities. Your lives may be different. They may have 24/7 help that you do not have access to in your own life. Why don’t we celebrate “whatever works”?

In the hearing loss community, I know people who criticize people who don’t allow “nature to take its course” and embrace their deafness. To some, if you do not learn ASL then you are shunning a community that could be your family. For others who have accepted technology and/or surgery to stay connected to the hearing world, they may criticize those who have learned ASL for various reasons – personal reasons! I know people who criticize other people’s choices about hearing aids or cochlear implants. Why are we prone to criticize anyone who makes a different choice than what we have made for ourselves?

I think perhaps it is a form of self-protection. We may somehow feel that if someone who is very similar to us chose another path, that their choice may mean that our own path was a wrong one. It may be a form of defensiveness. If we see someone successful at living life with a disability, we may feel the need to criticize because we still have some problems with our own disability. If we see someone floundering at living life with a disability – and they chose another path? Many point and say, “I told you so”.

We could all learn to be more compassionate. We could all learn to listen more and keep our mouths shut.

When you judge another, you do not define them, you define yourself.” –
Wayne Dyer

If you judge people, you have no time to love them.” –
Mother Teresa

What May Happen if You Reserve Judgment

If you can keep your opinions to yourself, you may just make some discoveries:

You didn’t understand why they did what they did until you got to know them better.

You misunderstood their choice

After learning more about the person, you actually agree with their choice.

After time you find that you still would have done it differently yourself, but it seems to work for them.

If you can keep your negative opinions to yourself and instead pray for and encourage that person, you may discover a…

FRIEND who has the same taste in shoes!

Denise Portis

© 2012 Personal Hearing Loss Journal

Deep Breath – Start Fresh

Invisible Awareness Week is September 12th – 18th this year. I love the theme of this year’s promotion. How often do we take a DEEP BREATH and START FRESH? Perhaps the better question is how often do we NEED to do these two things?

Invisible illness or disability definitely takes adjustment. However, just when we may feel as if we have adjusted to a new lifestyle something will happen to take us back to “ground zero”. It may be that your disability or illness is progressive. Or perhaps, your life has simply changed in such a way that living with your challenges requires a new plan. For example, my children are now adults. Even though they still live at home at 21 and 20-years of age, both are working and going to college. This means that they may LIVE here, but I don’t see them as often as I did when they were younger. That means I don’t have the assistance of people who hear as often as I once did.

Part of the reason I decided to train and be matched with a canine partner, was so that I would be independent of my family’s help. Chloe has been a big blessing and I am grateful for her work of being my EARS and to help me with balance-related tasks. For all that she does, however, there are things she cannot do for me. A couple of weeks ago I needed to make a doctor’s appointment. The voice on the other end of the line had a heavy accent. Chloe obviously cannot assist me in understanding a voice with a heavy accent. However, I have found that because my life changes have been gradual, I already had a plan in place for when no one was home to help me with a call that had a heavily accented voice.

Are you a person living with a chronic or invisible illness? Do you have an invisible (or visible) disability? Do a quick assessment of your life, coping mechanisms, and skills. Do you need to take a deep breath and start fresh?

If you are a person living with invisible illness, I encourage you to check out the site for Invisible Awareness Week. Perhaps you can help to spread the word! There are a great number of resources available at the website.

Denise Portis

© 2011 Personal Hearing Loss Journal

Surgery Date

chloe-after-vet

Chloe relaxes after pre-surgical blood tests

We had an unexpected surprise at the vet today.  Last week we found what looked like a “mole” or “wart” on the tip of Chloe’s ear.  I made an appointment at the vet more to put my mind at ease than anything else.

Turns out it is a cluster-cell tumor (with a big ol’ long word in the beginning that I just could NOT make out).  ear-0021Chances are greatest that it is benign as most of these are, but surgery is schedulled to remove it on Wednesday.  We are getting a biopsy done “just in case”, as Chloe is a working dog.  The vet nor I either one wanted to take any chances.

Chloe enchants everyone who meets her up close, and face-to-face.  The vets all love her, and she actually enjoys the attention and love from others as she gets to be “off vest” while there. She loves people.  They had to “take her away” to draw blood for the pre-surgical blood work.  I heard a sound, and only saw the vet tech’s wide eyes on the other side of the counter about 20 yards down the hallway.  Evidently Chloe escaped.  (She isn’t use to not being right with me all the time, poor thing).  Chloe came barreling around the corner going full steam right at me!  I was speechless!  Fido‘s training “kicked-in” and right before she ran me over, I used the hand motions for a long recall.  She sat prim and proper after skidding to a halt.  Whew!

The vet said she was going to make some notes for the surgical team to make sure they made the smallest notch possible in her ear, and that they would use special sutures.  Still in shock, I only nodded numbly while she explained this.  I guess she was thinking that Chloe is in public all the time, and extra care should be taken?

A field spaniel with a snake bite came in while I was getting ready to leave, so scheduling the surgery went rather quickly.  Wednesday I drop her off (no food or water) around 7 AM.  I get to pick her up after 7 PM.  Will this be a long day for me or WHAT?  Grin!

Denise Portis

© 2008 Hearing Loss Journal

Not Santa’s Helper… TEACHER’s Helper

kathleen

When my daughter, Kyersten, started college this Fall, I had a brief moment of panic.  For 4 years, she has volunteered to be a “teacher’s aide” for me at school during hours she didn’t have other classes.  It’s really wonderful when your daughter is your teacher’s aide.  I didn’t have to worry about how she’d feel if I “bossed her around”. Smile.

Faced with a school year with no teacher’s aide, I put out a plea to my older students.  “HELP“!

I was surprised that a good number of students eagerly stepped forward to try to fill Kyersten’s shoes.  I could only chose one, and so went with who hit “reply” first.  I’m glad it was Kathleen.  Kathleen (pictured above) is one of my third year American Sign Language students.  She has been SUCH a big help this year.  As soon as she enters my classroom, she is in full “aide” mode.  She doesn’t even ask what needs done, as she figured out after the first class that the camera had to be set up for “Hot Seat”, (* see below), and without being asked she passes out graded work and new lecture notes to each student.

Kathleen didn’t even balk when I made a tiny “big deal” about a Christmas gift I had purchase for her, and even wore the HAT.  (Is that “game” or what?)

Over the past 7 years, I have learned to ask for assistance with much more grace.  If you have a disability and are “grumpy” about the fact you can’t do all you “use to”, then asking for help can be next to impossible.  Someone who is uncomfortable about asking for help, is not even a good candidate for an assistance dog.  Even assistance dogs like praise and the occasional treat.

n1143036281_30221118_5859 Chloe wouldn’t wear the hat, but was glad to pose by the tree.  She loves to work, but there are some things she can’t do for me.  She can’t pick up heavy books that I drop, and I don’t allow her to pick up things that would be dangerous for her.  An example would be that I broke a Christmas bulb when helping to decorate the tree.  I had to intervene quickly, as she has been taught an automatic retrieve (as most things I drop I don’t hear).  I obviously didn’t want her to pick up broken glass.  I had to ask one of my teens to help me.

In the grocery store today, I knocked over a huge box of Cheerios in the cereal isle.  I didn’t want canine teeth marks in the box.  It was big enough that Chloe would have had to exert some pressure to get it up high enough for me to reach it.  Instead, I allowed a person standing there watching to assist as they were eager to do so.  It was pretty easy for me to transition that to my classroom.  I’ve learned to ask my students for “help” when I drop something too heavy for Chloe to pick up.  My students never mind hopping out of their seats to help.

A big online THANK YOU to my 2008-2009 teacher’s aide, Kathleen. See you “next year”!

* HOT SEAT:  One student each week sits in an “interpreter’s chair” and listens to a pre-taped selection from which they are to sign all that they can.  They then take it home and choose 60 seconds to translate, practice and perform the following week.

Denise Portis

© 2008 Hearing Loss Journal

Made a Spectacle of Herself

This morning I went to the grocery store.  I hate to go on Fridays, but we were out of a few things that I couldn’t wait for at a later date.  I went first thing in the morning, anxious to avoid the crowds that hit the grocery store on Friday afternoon.

Chloe was in rare form and a bit too playful.  The autumn weather was gorgeous, so I chalked her good mood up to that, and decided this trip would be productive as she was also anxious to work.

Once we entered the store, Chloe decided I needed everything she came across on the floor.  As this is a new skill for her (point and say “fetch object” to different items), I gave her some leeway.  I hope to eventually have her cued to specifics like “fetch water bottle”.  She already recognizes the specifics “fetch keys” and “fetch phone”.  A recent skill she learned was picking up a piece of paper.  This can be tricky, as paper tears easily.  She needs to make sure she doesn’t put a foot on it during the process of lifting it off the floor with her teeth.

The picture above is her fetching my shopping list.  To Chloe, this is a very grand game; she doesn’t realize that on days my balance is bad that the last thing I want to do is to reach clear to the floor for something flat.  So if it is a game to her and HELP to me, we are both happy.

At the check out, I walked into one of the “self-check” out lines.  These things use to scare me to death, and I actually blogged about a particularly funny “first encounter” here.  Now that I have a cochlear implant, I actually like these lines as I can hear the computer very well, and it also chirps and dings.  The conveyor belt even “whirs”!  All of these “noises” are wonderful little reminders of the blessing of “hearing again”, so I probably take more time than I should.

After completing the scan of all of my items, I pressed “finish and pay” just like the “self check-out” veteran I am.  Unfortunately, my Amex card wouldn’t scan.  I caught the eye of a nearby front-line manager, and she came over to see what the problem was.  Evidently it wouldn’t take credit cards “today”, so she printed out a receipt and asked me to follow her to HER cash register where I could scan my card.

I quickly zipped my Amex card through, and promptly dropped it on the floor.  Chloe, still in a great “I’m fetching everything today” mood, did exactly what a hearing assistance dog is suppose to do.  They are trained to do automatic retrieves, as HoH and deaf people often do not HEAR what they’ve dropped.  So before I could interfere, she was in a “bow” trying to pick up my credit card.

Dropped credit cards are “ornery little pieces of plastic” when laying on a hard surface.  She tried for about 20 seconds and then kind of smacked at it and “woofed” softly.  I heard laughter from several different locations, and so lifted my head to see who was watching.  I became aware of 4 or 5 employees standing there watching.  Chloe, a trifle exasperated, started lifting my shoe by the shoe strings in order to retrieve SOMETHING.  I whispered WRONG, as this can set me on my behind fairly quickly! She spied a dropped receipt and quickly retrieved THAT and laid it in my hand.  I pointed once more to the card, and she finally was able to flip it enough with a toenail that she could pick it up.

Applause and cheers erupted around us, and I bemusedly grinned at my working dog. She sat there sweetly with tail flopping 90 mph, very VERY proud of herself.  Several standing around asked her name, and I told them.  In hindsight, that actually wasn’t very smart.  When they see her now and call her name, she’ll want to see who knows her.  Sigh.  I guess I’ll cross that bridge when I come to it.  It’s there on my horizon most certainly, as I never go to any grocery store but this one!

Denise Portis

© 2008 Hearing Loss Journal

Waiting for the Woof

People who love dogs often get along great.  Folks who have an interest in dog-training, often find that they, too, can easily become friends.  Those who are in training or waiting for a service dog, have a unique bond of shared experiences, dreams, and a new-found independence.

I am very blessed to live close to Fidos For Freedom, Inc., in Laurel, Maryland.  It is not only where I received my own working dog, Chloe, but I have made many friends of the clients and “fidos” there.  We continue to train and “hone our skills”.  It’s even better that I call my trainer… FRIEND.

The internet is a wonderful thing.  Not only can you research and “learn”, but it also levels the “playing field” for many with disabilities.  I know deaf people, blind people, and folks with mobility challenges who use the internet and “connect”.

I read a lot of different types of blogs.  Obviously, I have an interest in service dogs and matches between canine/people partners.  I met Elizabeth online through our blogs.  She has a great blog called “Waiting for the Woof“.  She is waiting to be matched with a dog through PAALS

She writes about the “wait”, and also posts a great deal of information and “news” about service dogs.  I have actually learned a thing or two (or three) from reading her blog.  We’ve also connected “off blog” through email and I’m very excited about her upcoming match with a working dog of her own!

PAALS differs from Fidos For Freedom, in that the client is responsible for seeking donations and funds towards the expense of their Fido… or in this case “Woof”!  I wanted to help Elizabeth get the word out about her fund-raising campaign towards getting her own service dog.  Her goal is $7000.  Some people think, “I can only give $25 or so… how can that help?”  However, every donation adds up… so even the “small amounts” count!

I’d love for you to take a look at her website and read her story.  She’s a wonderful lady and I know her story will touch you!  If you can help with even a small donation, I know Elizabeth would appreciate it!  I’ve seen what a mobility service animal can do for their partner.  Until you see it first hand, it’s difficult to understand the freedom and independence they grant to their partner.

After reading more about Elizabeth, if you’d like to donate it is actually very easy to do so.  Simply go to this link (click here).  At the site, click on the “Donate” button under the heading of “General Donations are Greatly Appreciated.” When you are taken to the PayPal page, you can then choose to donate via credit card or directly via PayPal. There is a space to indicate special instructions – this is where you can put the name of the person for whom you are donating. (Elizabeth Riggs)

Let’s help Elizabeth reach her goal!  I’d love for her blog to direct us to a new link… “Living with the Woof”!

DeniseP