Sometimes? You Are Going to Have a Bad Week

Chloe was having a pretty good week. At least she was until I told her to get in the bathtub. NOT her favorite thing. If “hound dog” could do forlorn, then honey? She’s gonna do FORLORN in the bathtub covered in suds.

While I scrubbed her and told her what an awesome dog she was, intervening during those “I’m gonna shake” moments, I thought about how quickly things can change.

Chloe was happy and excited to get home from class today. She was rough-housing with her buddy, Tyco, when she heard me call her upstairs. She came running with her tail all a-wag. I told her to get in the tub and proceeded to break her ever-lovin’ heart. She is drying and pouting over in the sun as we speak. If I’m lucky, she’ll have forgiven me by suppertime.

Spring has “sprung”, I’m getting a handle on my new schedule, Terry and I just took 2 days away to re-group ALONE (grin), I’m feeling very connected and supported at my primary “free time” activity (Fidos For Freedom Inc., in Laurel, MD), and then it happens. When you can see change coming you can run like mad… or at least brace for it. But sometimes? Well sometimes change smacks you up side the head like Gibbs smacks DiNozzo. It’s completely by surprise. You lay on the floor, dazed and confused, staring up at the ceiling fan thinking, “What just hit me?”

I’ve even let this unexpected negative “change” suck me into an old habit of depression. I could feel it creepin’ up on me. I’m blessed to have a live-in psychologist and I made sure I changed my “8 hours of sleep a night” to 10 hours immediately. That seemed to help. That in addition to some time since the SMACK DOWN, I’m feeling like I can do this thing called life again, despite the newest challenge. Change can be hard and can create a lot of stress. Heck. I was having such a meltdown (as were other members of the family), hubby announced “Let’s go out to eat for supper!” I begged and pleaded and implored him to allow me to fix supper (yeah, right!), but he insisted we go out to eat. We walked out the door discussing these serious issues that “done smacked me up ‘side the head” and half way to the car my husband stopped dead in his tracks and interrupted me saying, “Um Denise? Where’s Chloe?”

You know the service dog who is with me 24/7? The one on the other end of the leash every waking moment of my life? Poor forgotten Chloe stood inside the locked house door whining and whimpering. So yeah. I am THAT distracted by my smack.

There are various proverbs that remind us that life is not easy. Everything is not always going to go well. Sometimes bad things happen. It doesn’t matter if you have disabilities or not. Life can be very, very good. Yet any of us who have lived enough of it know that it can also be hard. I survive because of my 3 “F’s”: Faith, Family, and Friends who care. Surviving is sometimes one day at a time, one week at a time. This is why people with disabilities should take care not to isolate themselves. It’s so easy to do. Isolation is even easier than having to face interacting with others while learning to live successfully with a disability. But isolation is dangerous. We need others. Others help us do that “surviving” thing!

I for one and very glad to see Monday this week.

Chloe, on the other hand, is just glad her monthly bath can be chalked off.

Denise Portis

©2012 Personal Hearing Loss Journal

Time Off

Chloe's vest comes off and she gets the "beach rules" from Denise. Unaccustomed to being "vestless" in public, she was very attentive and unsure in the beginning

 

As a surprise, my husband reserved a couple of  nights in a motel at Ocean City, MD, while we were on spring break from work. (One of the perks in working for a college). Apparently March is the time to go if you are not a crowd lover – or “sun” lover. Too cool to lay out or play in the surf, but beautiful weather for walking and many opportunities for quiet time.

Chloe is normally “working” when she is in public. Determined to give her some time to just be a dog, I removed her vest for large amounts of time. She was at first a little timid about being without her vest. Once she saw some other canines on leash though, the wag was back in her tail. Even working dogs need down time. People ask me all the time if Chloe gets to relax. I always have to grin. Chloe is almost 8 years old and at home? Well, let’s just say she knows how to relax. She doesn’t wear her vest at home, but she still alerts to timers, my phone, or my name being called. But she naps (and snores), she plays with her buddy, Tyco (our family dog), she has several squeaky toys, she squirrel watches, and eagerly awaits family members coming home.

Chloe enjoys working though. She danced her way on campus just this morning and wagged her way all the way to the elevator. Sometimes I wish some of her “wag” would rub off on me as 7 AM classes on Monday seemed awfully early to me after a week off!

Everyone needs time off. It can be hard to do if you are working to pay bills, save money, or try to get out of debt. But time off can be in small, “mini” vacations. Even an hour or two here and there can be very beneficial in helping a person re-group.

People with DisABILITIES Need R&R too!

I have met a number of people with various disabilities that have confided that they rarely do what others call “fun” things. Think about it for a minute. If people who walk without assistance, hear without assistance, see without assistance, and speak without assistance enjoy things like movies, walking, reading a good book, or hanging out with friends, well? It just may not be that easy for others.

I like going to the movies. I went to see “The Hunger Games” over spring break with my husband and 21-year-old son, Chris. But I don’t get the same level of enjoyment out of movies that they do. Even with Chloe by my side, I am very disoriented in the dark, especially if my cochlear implant is picking up the very loud commercials and previews on the screen. As I make my way to a vacant seat, I am often fighting the effects of vertigo. After I get seated – hopefully in a place where people won’t have to crawl over my assistance dog and I – it takes a number of adjustments to find a good program on my CI to best hear the movie. If I do that, I sometimes find it difficult to converse to the person right next to me too. At times I miss things said in the movie. If I’m with someone I know well, I’m not bashful and will lean over and ask, “What did they say?” There are not any captioned theaters close to my home (although I am glad there are some within an hour’s drive), so most of the time I go to the same movies you would attend. However, not having captions mean I have to really pay attention! Can I just be honest and say that I’m unable to eat popcorn and catch an on-screen conversation at the same time? (BIG GRIN). I have to really focus and concentrate to understand what is going on. So it is still “fun” for me… just not perhaps the same level of “fun” it may be for you because it does take WORK.

For some, sitting down and reading a book may not be “fun”, and it doesn’t mean they don’t enjoy a good book. Some folks have trouble even holding a book, or turning pages easily. Taking a walk may relax YOU, but for someone who has Meniere’s disease it can be difficult to do a simple walk. My world constantly turns counter-clockwise. It is a slow rotation, mind you, but a rotation nonetheless! On high humidity days, the rotation picks up speed – one of the reasons I just don’t try to walk on days like that! So walking on a sidewalk in a straight line takes concentration. I have given up walking with family members. Although I enjoy the conversation, I cannot talk and walk at the same time! I can talk to my walking buddy, Chloe, and she just listens. I don’t have to worry about her end of the conversation and my having to make sense of what she said while still putting one foot down in front of the other. We love to go into the woods on trails and in grassy areas too. This requires even more concentration. I usually shut up at this point as I have to carefully balance each step. So yes… I enjoy walks but probably not on the same level you do.

Despite having to make adjustments and find a new way of doing seemingly mundane things, even folks who are differently-abled need to take breaks. Perhaps even a lot of them! They may be in the form of naps. I am learning that napping or resting is a necessary requirement for many people with certain kinds of invisible illnesses. I require 8-10 hours of sleep a night. (When I tell people that, they FALL OUT, but if it helps you get through a day “hearing well”, you do anything necessary). Others may require a nap – or TWO. They aren’t lazy. They aren’t depressed (although just like anyone, people with disabilities can and do get depressed). They simply require some extra rest in order to continue a day’s work.

Chloe "relaxing" on a mini vacation at the beach. She really knows how to de-stress!

Careful not to judge. You may wonder why someone doesn’t enjoy the same kind of “down time” you do even though you have the same disability. Each person has individual differences in their disability. I have a friend who enjoys running in his spare time. I’m talking about REAL races… the kind where you take off after hearing a starting pistol! He’s an incredible runner and does very well. He is a bi-lateral cochlear implant user. When I first met Sam, I was astonished to hear what he did for fun! Having hearing loss and balance issues, running isn’t something I can enjoy.

I’m not saying we shouldn’t look for others who are struggling with some of the same issues. We can mentor, give advice, and support someone else in a way that will give them the tools they need to live a victorious life. But do be aware that you may share a diagnosis, but have different symptoms, struggles, and issues. We can still be a listening ear and give encouragement. Just be careful about insisting on something that works really well for YOU, because it may not work really well for them.

I’d really love to hear about some of the ways you choose to unwind! What do you do to relax? What is FUN for you? What do you need to do in order to enjoy some of the things others do without accommodation?

Denise Portis

© 2011 Personal Hearing Loss Journal

 

 

 

 

 

I Have Meniere’s Disease – Harsh Reminder

I have Meniere’s Disease. It is easy for folks to forget that as the disease is “invisible”. Amazingly, I sometimes forget I have it myself. So that is just embarrassing! GRIN. Meniere’s disease manifests itself in individuals in a variety of ways. The disease lacks specific symptoms and triggers that are true of everyone. The disease varies person to person. For myself, the weather tends to be a very specific trigger for me. If pressure systems come into the area that include heavy rains or even high humidity, I know that I will have a “bad balance day”. If that day is simply the beginning of a string of similar weather days, I can be so off-balance by day 3 or 4, that I practically have to CRAWL up and down steps. It’s rather embarrassing to crawl when you are 45 – believe me!

Here in Maryland, we have had a significant amount of sunny, low-humidity days. As a result, my balance has been pretty good. Yesterday, I did laundry and actually jogged up and down the steps WITH a laundry basket. Yet I forget sometimes that in spite of my having few visible symptoms, I still HAVE Meniere’s disease even on bright sunny days.

Chloe does a number of things for me, only some of which are hearing alerts (what she was originally trained for at Fidos For Freedom). Chloe has also been trained to help me with a number of “balance assist” tasks which are very helpful on days I am experiencing Meniere’s disease symptoms. As a matter of fact, there are weeks that Chloe actually does more balance work for me than she does hearing alerts. One thing we have taught her to do is to “roll” her own blanket. I carry a blanket that is HERS. The blanket goes to every place I teach. It smells like her and she knows it is her “safe place” to be unless I ask her to do something for me. I usually put it out of the way in the classroom, but where she can easily see me. The blanket and Chloe are usually within 4-5 feet of me at all times. Below is a video of Chloe “rolling” her blanket — she adjusts the carpet square to be high enough that I can easily reach it without having to bend past my limitations.

Harsh Reminders

I get aggravated at family and close friends sometimes when they make suggestions for me to do something or try something that they KNOW I cannot do. It’s easy to forget certain things I cannot do because I don’t walk around with a sign on my shirt that says, “Beware of fall when bending!” You know what? Sometimes the person who forgets what I can and cannot do is – ME. You’d think I’d always be aware of the fact that I cannot bend to get something off the floor without paying the price. For me… bending far enough to retrieve something off the floor means that I lose consciousness for just a few seconds. Everything goes “black” in my vision, and my “hearing” (even with a cochlear implant) turns off. As soon as I stand back up, everything snaps back into focus. If I bend quickly, (for example to try and catch something as it is falling), I usually “join” the item on the floor… only I am sprawled out looking ungainly and mystified as to how I got there.

We’ve had beautiful weather here in Maryland lately. I need to remind myself on days like these that I still HAVE Meniere’s disease. In class this morning, I began gathering my things up to pack into my bag and exit the room. I dropped my roll sheet, so Chloe went over to pick it up and bring it to me (an automatic retrieve). As I was standing next to her pink blanket, I decided to save myself time and reached down to pick up her blanket. I lost my balance and my forehead crashed into the podium. After connecting with a wicked CRACK, the impact popped me back on my caboose. Thankfully, I didn’t lose consciousness. Chloe trotted over to me with the roll sheet and dropped it into my lap. She wagged her tail at me, nose 3 inches from my face.

“Hey Denise! Umm… why are you on the floor?” (Yup. I can read my assistance dog’s mind. Scary, huh?)

“Guess I should have had you roll your blanket, huh Chloe?”

Upon hearing “roll blanket”, she calmly rolled the end of the blanket and then tugged it over closer to where I sat.

I heard a student over my shoulder ask, “Ummm. Mrs. Portis? Are you OK? Was that your HEAD?”

I tried to chirp out in a manner that was convincing, “Oh sure! I’m fine, no problem!”

As I used Chloe in a stand/stay to get off the floor… I thought to myself one word – over and over again.

stupid

Stupid

STUPID!

Harsh reminders are needed from time to time, if not for any other reason than to remind us of the consequences of forgetting our own limitations.

We need to remember our own limitations. As a person with hearing loss, it helps me to remember that I cannot hear well in really noisy, crowded areas. If I need to have a conversation with someone, it is better to ask them to step over to the side out of the “hub-bub” of noise if I need to talk to them. Failure to acknowledge what I cannot do well (hearing in noise) only results in that I will be frustrated and angry at my inability to understand the conversation. If I want to play with my dogs, I need to remember to sit on the floor in order to tug on toys, throw balls, and squeak stuffed animals at them. If I try to “play” standing, I am sure to take an unplanned nosedive.

Have you had some harsh reminders about your own invisible illness or disability? Some lessons are hard to learn!

Denise Portis

© 2011 Personal Hearing Loss Journal

Reflections on National Invisible Illness Awareness Week

According to the Invisible Illness Awareness website, the following statistics are true:

  • Over 100 million people in the U.S. have a chronic illness;
  • 20.6 percent of the population, about 54 million people, have some level of disability;
  • 9.9 percent or 26 million people had a severe disability
  • 1.8 million used a wheelchair
  • 5.2 million used a cane, crutches, or a walker
  • So that is less than 6% who have a visible illness.
  • There are many illnesses that start out being invisible and as the disease progresses it becomes more visible.

Also note that:

  • 26 million persons were considered to have a severe disability;
  • yet, only 7 million persons used a visible device for mobility.
  • Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers.
  • In other words, 73% of Americans with severe disabilities do not use such devices.
  • Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.

U.S. Department of Commerce (1994). Bureau of the Census, Statistical Brief: Americans With Disabilities. (Publication SB/94-1).U.S. Department of Commerce (1997). Bureau of the Census, Census Brief: Disabilities Affect One-Fifth of All Americans. (Publication CENBR/97-5).

Why Do I “Plug” Invisible Illness Awareness Week?

I have been trying to raise awareness about this week for three years now. This year, a friend noticed my “don’t miss” posting on Facebook and couldn’t resist teasing me about it. After all, I don’t exactly allow my challenges to be INVISIBLE. I wear a bright red ear mold on the hearing aid in my “deaf” ear. I wear sparkly “bling” on the cochlear implant on my “hearing again” ear. I go about my life accompanied by a hearing assistance/balance assist dog 24/7. I learned long ago that it was in my best interests to make an invisible disability – VISIBLE. It kept me from being knocked out of the way, and helped people realize that something about me is different. I can still work, shop, go to movies, hike, and dance… yeah. OK, maybe not that last part…

I just don’t hear well… especially in big, cavernous places, or busy, buzzing atmospheres. Once you get my attention and I know you are talking to me, I can actually hear you great! I may have to ask for a very occasional repeat, but for the most part I do really well. I’m proud of how far I’ve come in my hearing. Despite all my visible reminders and “kissing sidekick”, Chloe, people who know me well (friends, co-workers, and family members) will forget that I may have trouble if you don’t get my attention first and that I can’t move FASTever. Heck… sometimes even *I* forget that I cannot move fast. Nothing reminds me quicker than when I

fall

down

and

go

BOOM!

Through the years I’ve been able to meet some wonderful people. Some examples include:

1) Folks through the training center at Fidos For Freedom.

2) People at Hearing Loss Association of America conventions or conferences

3) “Hearing Again” recipients at Cochlear America conferences

4) Individuals in support groups for tinnitus, Meniere’s disease, hearing loss, and assistance dogs users (both face-to-face and in virtual environments online).

Not every disability can be made visible. Not every person chooses to even try and make something invisible – visible. They have their reasons and it is an individual’s choice how they want to disclose or keep hidden any disabilities they may have. It could influence their work environment, relationships, and even self-esteem. I choose to support ALL individuals who live with chronic illness, invisible illness, or disability. Recognizing these illnesses once a year in a push for national awareness, I hope will eventually dispel erroneous ideas and information about these very populations. This is one of the reasons I “blog”, and invite guest authors to write for “Hearing Elmo” as well. Raising awareness makes a difference… one person at a time.

I read some incredible stories of courage, faith, and perseverance this week at the national website for invisible illnesses. You can check out some of them here. I’m proud to be a part of a community of people who choose to live a victorious life  – “in spite of”.

Take some time this week if you can to recognize the courageous people that you know who live with invisible illness and the choices they have made in order to live life to its fullest!

Denise Portis

© Personal Hearing Loss Journal

“Family”

Approximately 1 in every 8 Americans experience some degree of hearing loss (Binder, 2011). This is approximately 36 million people – just in the United States. While to some, this number may seem overwhelming or unfortunate. For me? I have to admit to a small “thrill” – for you see… I’m a part of this “family”. I am one of those “1 in 8”.

What is “family”? The obvious definition includes those to whom you are related. I’m very grateful for my immediate family, for in many ways they fall into the “family” of which I am writing today as well. For the purpose of this post, “family” consists of individuals who understand by direct or indirect experience, a life that may be different as the result of disability – whether it be congenital or adventitious.

Hearing Loss Association of America

I recently had a couple of wonderful weekends that helped solidify this feeling of “family” for me. The first was when I went to one day of the 4 day national convention for the Hearing Loss Association of America. This year it was in my area, so I could not pass up trying to go at least one day. I was able to attend a number of workshops, all of which had CART. The rooms had terrific amplification, so I was able to hear the speakers of each workshop very well thanks to my cochlear implant. However, there were a number of people in each workshop who used the CART. On a large screen next to the speaker, every word spoken was also typed by a trained captionist. Those who had never experienced CART before, and therefore had never experienced workshops such as these that were truly accessible, hung on every typed word! As I looked around, nearly every ear had a hearing aid or cochlear implant – sometimes BOTH. I counted six hearing assistance dogs in attendance at the convention on Saturday. I was surrounded by “family”. Even those without hearing loss knew someone who did, were family members, or professionals that worked with our population. Between workshops old friends and new friends often crowded around talking. I couldn’t get over feeling like I knew these people. There were no snide comments or competition over who had the better cochlear implant or hearing aid. We were all “family” – with an intimate knowledge of what it means to live with hearing loss.

I attend a local chapter of HLAA, but being at a national event has no equal. The Internet has allowed people with similar disabilities to contact, share information, and get to know each other in a supportive environment. Some of the people I met I had only known online. However, these national conventions allow us to meet face-to-face! What a treat to literally hug the neck of some of my “family”!

This past weekend, I was able to hang out with a wonderful friend who has bilateral Nucleus Freedoms. She lives in North Carolina and since my husband and I were going down to visit his mom and dad, I took the opportunity to spend the morning with her. She took me to one of her favorite places – the North Carolina Zoo. I hadn’t seen the zoo in at least nine years – not since I had moved away from the area in 2002. We have so much in common in addition to hearing loss. No – we do not have similar backgrounds or childhood experiences. But we both are advocates and do all we can in our own small realm of influence to make a DIFFERENCE. She is a sensitive soul who sees much more than a normal set of eyes can see. It shows up in her photography and in the simple things she points out. A whispered, “L o o k“, usually yields a treat of catching LIFE in an unexpected way. I consider her “family” although we are not related.

Fidos For Freedom, Inc.

At Fidos For Freedom, clients include those with mobility issues caused by numerous types of disability or illness, and people with hearing loss. I cannot count the number of different types of disease, invisible illness, and disabilities present in our “family” at Fidos. The fact we are there for the same reason makes us “family”. Whether client, trainer, puppy raiser, volunteer, or DOG… we find a bond and sense of “family” that cannot be found in other groups in our lives.

I am thrilled to share information and get to know people all across the U.S. who are partnered with assistance dogs. Our disability or invisible illness may be different… but we are the same. Some have partners from organizations like Fidos and some are owner-trained teams. Regardless, we are “family” and I feel a loyalty towards these teams that defines the kind of “family” we are.

Sometimes FAMILY are not “Family”

My readers share with me sometimes that trying to get family to understand what it is like to live life in “their shoes” is quite difficult. For those who acquired disability or invisible illness later in life it may make more sense that family members such as parents and siblings seem incapable of grasping who you are now. However, there are others who have shared that even though their own challenges began at birth, family members are unable to fully understand (or perhaps cope?) what it is like to experience life with additional challenges. I truly believe that people with disability and invisible illness are more capable than those who are “normal”. Learning to adapt, and seeking support, information, and techniques create a malleable, strong individual. Oh sure! There are times we flounder. Change is never easy. But the end result yields a person who is extremely ABLE – not disabled. It is unfortunate that many people to whom we are related are unable to really connect with us once change takes place. Perhaps our peers often become “family” to us because they help us stay connected to life in a more positive way. They understand. Relatives often lose contact with us or only see us once in a great while. These individuals who offer daily support, information, and “family” literally evolve into a close knit community and family. I have had some readers share that they are closer to those in their peer group (disability group) than they are to siblings, parents, and other relatives. They have shared that not only do these “real” family members not understand – they don’t want to understand. I was recently reminded that my own siblings do not really know who I am anymore. After something rather tragic occurred in a relationship I find now broken, I wailed to my mother on the phone how terrible it all was. I shared some things with her that I had never shared before… and she responded, “You never shared these things with me when you were going through this”. So I am (painfully) aware that sometimes our family members are unaware and out of touch because we withdraw.

I am blessed to have family who are also “family”. My immediate family have been a safe haven of support throughout all of my adult life. My children have never known me without hearing loss. Mom’s favorite word growing up has always been “huh?” My husband held my hand both literally and figuratively throughout the process of losing my hearing over 12 years. When I became profoundly deaf, he was my biggest cheerleader in seeking other technology that would help me hear again. My family willingly sacrificed so that I could attend trainings and eventually receive an assistance dog so that I could be more independent. My immediate family members advocate for those who have any type of special challenge. They have participated in TBI (traumatic brain injury) camps, hearing loss conventions, local HLAA chapters, Walks for Hearing, cancer awareness walks, and much more. They know and realize that  disability or invisible illness does not define the person. They have always seen the PERSON first. Because they understand what it means to live with disability or invisible illness simply because they LOVE someone who does have challenges, they are “family” as well as family. I hope that many of you have family members that are also “family”. People who support you without hindering you. People who cheer you on and look forward to your eventual success.

Look for – and BE – “Family”

If you are currently adjusting to acquired disability or invisible illness – please know you are not alone. Find a computer and Internet access. It won’t take you long to discover you are not walking this road alone. As you reach out, look for ways to connect and be “family”. I promise you that there is no other feeling like finally… belonging.

Binder, M. (2011). Hearing. The Ear Man: Hearing Aid Service. Retrieved June 28, 2011, from http://www.theearman.com/hearing.html

Denise Portis

© 2011 Personal Hearing Loss Journal

 

Idiot Lights

Don’t you love “idiot lights”? And if you know me, you know that I pay attention to them. (Gulp. Does that make me an idiot?)

I’m one of those people who drives 64 MPH in a 65 MPH zone. I always stop on red even if it is 2 A.M. and no one is around.

Needless to say since one of our car’s “idiot lights” has been telling us for 3 months that the oil needed changed, I’ve been bugging my husband to take the car to get the oil changed. The fact that the “Jiffy Lube” sticker on the windshield ALSO said the oil should have been changed at the end of MARCH, only further compelled me to NAG. His insistence that the manufacturer’s guidelines and the lube center’s guidelines differ, does not instill a lot of confidence in me. After all… the car’s “idiot lights” told me the oil needed changed as much as that sticker on the windshield! You see? My husband is PURE GENIUS when it comes to computers. He can do a number of “handy man” things around the house thanks to having worked at Home Depot while in college. But cars? Nope. I’ll just reiterate that his stating “not needed” – failed to inspire confidence in me!

According to him, the sticker always indicated changing the oil much sooner than needed. Instead, follow the manufacturer’s guidelines. How about those “idiot lights” though?

“Everyone knows those things rarely work right. You have to get them reset after getting your oil changed AT the car dealership. I don’t ever go there for oil changes!” he replied.

Evidently (according to hubby) “LOW FUEL” actually means you can drive another 100 miles. “CHECK  ENGINE” may very well be an irregularity that has to be re-set occasionally and is often reported as a problem with the model. “LOW TIRE” means you are parked at an incline and the car “thinks” it has a low tire. Sigh.

If People Had Idiot Lights

Wouldn’t it be grand if PEOPLE had idiot lights? You could meet someone for the first time and know some things without any words exchanged. You’d see a flashing:

Needs Work

Snores Loudly

Back Stabber

Yup… it would make life a little easier. We would know what to expect of a person before ever expending any emotional energy to get to know them! EXCEPT… my husband insists those idiot lights aren’t accurate. So that could mean that the little warnings we get about people we meet may be false.

The reality may be:

Works WELL

SINGS loudly

And Back SCRATCHER

If Dogs Had Idiot Lights

How about if working dogs in training had idiot lights? It might help trainers determine who would be best matched with particular dogs. It might help puppy raisers find out about the personality of the puppy they are raising to be a working dog. Perhaps a dog in training would have idiot lights such as:

Stays Calm

Very Instinctive

Easily Potty-trained

And Chloe’s may have been:

Ah… but remember? The idiot lights are not accurate. After all, trainers tell me Chloe was an incorrigible “hard-to-train” pup. But she is a hard-working, completely engaged, working adult dog. Thankfully, I can manage the occasional unfeminine “toots”.

Idiot Lights and First Impressions

Just as idiot lights for vehicles seem to be more bother than help, rarely providing accurate feedback, so too may “first impressions” fail us. People who come across as prideful, pompous, and bossy may actually be insecure. Controlling people may get on your nerves, but they often are the ones who can easily make decisions and get things done. I’m not saying this can’t go wrong. We would not see abusive relationships if it never went wrong.

What I am beginning to realize in this game of “life”, is that first impressions are often wrong. A quiet, reserved individual may actually make a warm, loyal friend if you work a little harder to get to know them. A loud and obnoxious know-it-all may actually have some insecurities and may thrive in a relationship that allows them to not have to work so hard at being perfect.

I’m all for boundaries. One of my favorite books is “Safe People: How to Find Relationships that are Good for You and Avoid Those that Aren’t” by Henry Cloud and John Townsend. However, we cannot allow our first impressions to “warn us off” people permanently. I think boundaries are set up AFTER we really get to know someone and identify they are not a “safe” friend or family member. But first impressions? Leave your brick and mortar at the door when you first begin to get to know someone. Sure, you may get some vibes that have you treading carefully as you work with a person or attend small group with a person. But how many of our relationships would we NOT have if people relied solely on first impressions? I think of the first impression others may see in my own life:

“I thought you were so stuck up when I first met you but eventually learned you could not hear in crowds”.

“Because of your BLING and service dog it was obvious you had some disability of some sort. In getting to know you, I often forget you are deaf. You are as normal as anyone else!”

“When you first asked for the main points of the meeting to be emailed to you I thought that you were basically asking for special privileges. Little did I know after receiving the “recap email” sent to the entire department that I missed a lot of important notes from the meeting too. This step helps ALL of us.”

If first impressions are a type of “idiot light”, we should remember that they are often wrong. Extend the benefit of the doubt to people who rub you the wrong way when you first meet them. In time you will discover if you had good intuition and need to erect some safe boundaries to interact with someone. However, you may learn that it was really a smoke screen that hid a wonderful person who simply had trouble letting the real “soul” show.

—————

I was so thrilled when my husband brought the car back this past week and said all the fluid levels were checked, oil changed, filters changed, and tire pressure checked. However, as I Headed to work on Thursday I happened to look down at the dash and lights. I grimaced as I saw the “CHANGE OIL” scroll across the bottom of the display. I tore my gaze back up to the road and mirrors and began to chant, “Idiot lights are inaccurate. Idiot lights are inaccurate…”

Denise Portis

© 2011 Personal Hearing Loss Journal

Hypervigilance vs. Awareness

Where is she looking? What does she see?

Being “aware” is a natural state for me. I think anytime an individual loses one of their five senses, they learn to compensate by being more aware of things around them. When all five senses are working, input is sent to an individual’s brain about their environment, people around them, etc., to help them determine if any action should be taken. However, when a sense goes “missing” as the result of acquired disability, accident, or illness, individuals have to learn to compensate.

Now that I have Chloe (my hearing assistance/balance assist dog partner from Fidos For Freedom), I have changed from a hyper-vigilant state to simply being more aware of my surroundings. You see, now I depend on HER. If I’m watching my partner as I should, she hears and then sees things I often miss. I’ve learned to pay attention to her body language and cues, as well as visual focus and reactions to stimulus around us (such as a sudden, loud noise). Do you know my blood pressure has gone down since I’ve been matched with Chloe? Hypervigilance is a negative state of being.

Psychologists define hypervigilance as an enhanced state of sensory sensitivity coupled with an exaggerated intensity of behaviors in response to possible threats. Hypervigilance is often accompanied by a state of increased anxiety which can cause exhaustion. People who are hyper-vigilant often stay in an abnormal high state of arousal and respond to stimuli by constantly scanning and detecting possible threats. Individuals with PTSD (post-traumatic stress disorder) often exhibit hypervigilance. Why then would a person who loses a sense,  struggle with hypervigilance? I do not believe that people with acquired disabilities start out being hyper-vigilant. I think it evolves after an individual experiences something very negative as a result of having lost a sense. For example, I do not remember the exact day and time – but I do know that in June of 2003, I was shopping in a retail store and was stunned by the reality of how dangerous being deaf can be. I was scanning the shelves for items and a person evidently needed by. I didn’t hear the “excuse me” or whatever was offered to let me know I was in the way. The woman pushed passed me fast and I ended up flat on my face on the floor. I rolled over and looked around to see her standing there indignant (and not at all apologetic) demanding, “Why didn’t you move?”

“I’m sorry – I’m deaf”, I replied. She had the good grace to at least blush, pushed her cart and hurried away. I was so shook up that I left my cart where it stood, gathered my things, and left. I vowed from that day forward that I would do everything in my power to make my invisible disability more visible. I went through a fairly stressful number of months after the incident and became hyper-vigilant whenever I left the house. I stayed in a state of exhaustion because of it. Enough time went by that I eventually learned to relax a little and just work at picking up good awareness habits. I wear my hair up so that the technology I use is visible. In 2005, I was implanted with a cochlear implant that served to reduce my tension even more since I re-gained the ability to hear. After I was matched with Chloe, “being aware” became even easier. In training, an oft repeated phrase we hear is, “Trust your dog”. In the beginning it is very difficult to do because we are not accustomed to doing so. It takes practice to eventually instill the HABIT of trusting our dogs.

I got a lot of flack this last fall from extended family members for taking my dog to the hospital with me when my daughter had emergency surgery. My family members who do not live with me do not understand that Chloe isn’t a “crutch” – she’s a tool. I use Chloe to be more safe and more aware of my surroundings. My husband and I very rarely go someplace without Chloe. However, occasionally we do go to places where we leave Chloe at home for her safety. These places may include: ICU areas of a hospital, zoos (where animals may become agitated since they want to eat Chloe), or to places that may have guard dogs (such as jails, etc.). When we occasionally go to amusement parks, I do not ride fast rides because of my balance issues. However, someone with an assistance dog may determine that these places are not good for the dog to be either. You can’t exactly put a dog on a roller coaster! So when I happen to be without Chloe, my husband has noticed that I am startled more easily because I don’t have anything alerting me to things I miss on my own.

I do not take Chloe with me to stores, church, and restaurants when I’m visiting my parents. They do not welcome the attention she draws. It is their home and I respect their wishes. I’ve had folks tell me, “WE will be your ears and watch out for you. You don’t need Chloe”. However, when I’m counting on people to cue me it never actually happens. People ignore many sounds that are just background noise to them. I’ve noticed that my parents can be having a conversation and stop on the curb while I just step right out into the road, unaware that a car was coming because they blocked my view of that direction. I have to be much more careful. I’ve also noticed that as a result of having a balance disorder, I stumble more when Chloe is not with me. In throngs of people, individuals “bump”, “crowd”, and invade the space of people around them because they are in a hurry. When I have Chloe with me, people notice and take care to stay outside my immediate perimeter. I’m rarely jostled or bumped when Chloe is with me. As a result, I fall and stumble less.

So Chloe does reduce my anxiety and create a different kind of awareness. I’m aware of HER. I depend on her. Having said all of that, having an assistance dog is not for everyone. In some ways it is like having a really smart toddler around. She investigates things with her nose, and yet I don’t want her to put her nose on every thing we come across. So I have to remind her “head up, Chloe” and be aware of things at her eye level. For example, because it is Easter season, going to Wal-mart means I need to be aware of all of the stuffed bunnies and ducks often at her eye level. Stores put them there so a child will say, “Mommy? Can I have this?” Well Chloe would like them too! So I have to be aware of her at all times.

At Fidos For Freedom, teams do a “meet and greet” activity. I HATE THEM. This activity is very hard on the people there who have a hearing loss. The idea is that you put your dog in a safe place and then communicate with another person or a couple of different people in a group. When you have a hearing loss though, you have to see the person’s face if you are in a large, noisy room filled with other groups of people talking. So it is difficult to make sure Chloe stays “safe” and STAYS PUT while actually carrying on a conversation. The activity is one of those “necessary evils” we endure so that we know what to expect in public – in REAL life.

I have heard people with hearing loss bemoan how difficult it is to carry on conversations when there is a “hub bub” of chatter around them. Sure, I may have a special program on my cochlear implant to help eliminate background noise, but it is not perfect! It is hard to concentrate on the speaker! Add to that trying to make sure your partner is in a safe place, only adds to the stress level a bit. So although Chloe eliminates much of the stress in my life, it can add to it as well. I don’t know that there is a good solution for “group meet and greet” for a person with hearing loss also partnered with a dog. (I’m open to any ideas though – grin).

Ok? SO?

Today’s post comes as the result of an email I received last week. With the person’s permission, I asked to blog about her question. “How do I know if an assistance dog would help me? Is it more trouble than it is help?” These questions are important ones if the person is thinking about training for an assistance dog. Some others you may need to ponder:

1. Am I OK with the attention having an assistance dog draws to me in public?

2. Am I OK with people stopping me and asking what the dog does for me?

3. Am I OK with having to pack a “bag” to go anywhere in order to make sure I have the things needed to travel with a dog?

4. Am I OK with occasionally being confronted and denied access?

5. Am I OK with having to care for and groom a dog daily?

6. (Because of #5), am I OK with having to invest in stock in LINT ROLLERS?

These questions and more are important things to consider if you are thinking about getting an assistance dog.

For me, the #1 benefit is that I am more relaxed and at ease in my awareness. I no longer feel the need to be hyper-vigilant and I’ve learned to trust my dog.

Where Can I Get One?

Self-training or Hiring a Trainer:

Countless owners have “self-trained” their dogs to perform specific tasks. There are pro’s and con’s to doing so. Private trainers can be expensive, but they can custom tailor a program for the specific needs of a person with hearing loss. Unfortunately, many dogs wash out before they can become service dog material, and a person might go through several dogs before finding one that is right for the work. Self-training is difficult, and also runs the same risk of washing out several dogs before finding the right one. But many who have self-trained their dogs have a strong bond and partnership as a result of this work. Usually, people who self-train have very good mobility or caregivers to help out, have had one or more service dogs in the past and have had some training experience, even if only with their own dogs. Individuals can hire a trainer as well and some of these trainers assist in “puppy selection”.

Some links to get started:

http://www.dogpawsability.com/

http://sdog.danawheels.net/ot-adog.shtml

http://www.amazon.com/Teamwork-II-Training-Manual-Disabilities/dp/0965621618

Training Organizations:

There are numerous organizations from which a person can get a “program” trained dog. A list compiled by Assistance Dogs International, can be found at:

http://www.assistancedogsinternational.org/membersstatecountry.php

Another list can be found at: http://wolfpacks.com/products/servicedog/trainers.html

Many programs offer training and a dog at little to no cost, as they depend on the generosity of donors, sponsors, and volunteers. Others have ways in which you can help to raise money for the dog being trained for you.

Every state has similar requirements for a hearing assistance dog, but I always carry my ADI guide to Assistance Dog Laws. A copy can be obtained at: http://www.assistancedogsinternational.org/guidetodoglaws.php

Feel free to email me if you have additional questions!

Sincerely,

Denise Portis

© 2011 Personal Hearing Loss Journal

Disabled (Grimace)

Denise and Chloe at a dAP for HLAA-Frederick County in 2009

Disability (grimace). There is a small part of me that cringes when I hear that word, for often it is heard with real (or imagined) inflection that denotes a negative meaning. Occasionally, I get some “flack” from some of my readers about using the term “disability” so freely. Some folks hate the word and avoid it all costs. Others embrace it freely, caring not what the “label” may be since they are struggling to simply cope with WHAT IS. Recently, a fellow client at Fidos For Freedom used the term “differently abled”. I like that! That is the first time I’ve heard that particular variation. At Fidos For Freedom (where my hearing assistance/balance assist partner comes from), numerous programs are designed to carry the maximum “punch” in creating awareness in our community. One program is the dAP (disABILITY Awareness Program). Demonstrations are given at schools, churches, community groups, fairs, and much more to inform and teach the public about the different types of assistance dogs available, partnered with people with various disabilities. The program focuses on the abilities of all people and how an assistance dog can provide independence to people who do things “differently” as a result of chronic disease, invisible disabilities, hearing loss, mobility challenges, and much more.

Personally, I use the word ‘disabled’ freely for it is the wording in the Federal law that protects my rights as an individual who happens to have disabilities. As long as the law uses the term, I will continue to use it in order to identify with my freedoms – not my actual disability. I’m all for changing the term “disability” to something less negative, but until that happens on the federal level – I’m sticking with the term that protects my rights. Labels are awful aren’t they? I actually prefer “person with disabilities” for it identifies me as a person FIRST, and the disability second – as a descriptor, not a noun. I’ve been a member of the American Association for People with Disabilities for a number of years. They have done a lot of terrific work in laying the foundation for future laws that protect Americans who happen to be “differently abled”. Do I hope the word is eventually abolished and changed to something more politically correct? Well sure I do… but in the meantime I will continue to use a word that represents my freedom as an individual with disabilities.

Why is the Word So Negative?

Many people who hate the word “disabled” explain that it reminds them they are different. Yet we are. Acceptance of that is key IMHO to truly becoming independent in spite of a “disability”. One reader explained, “the word makes it sound as if I’m broken, or flawed”. It’s a shame society (and sometimes our peer groups) create this false picture of what a disability is. Often these negative connotations are the result of interactions with people who do not live with physical, mental, or emotional limitations that require a “new way”. People can be uncaring and mean (and you don’t have to be in junior high to experience this!). Sometimes the most hurtful things are said by people who actually care about us and are struggling to understand. Ignorance (not stupidity) is often to blame. It’s very difficult – but when you have the opportunity to correct and inform someone who doesn’t get it, do so in a proactive (not reactive) way. I try to remember that what I say may influence how this person interacts with someone else who has a disability in the future.

I believe that those who are born with a disability have the hardest time accepting the term. For example, I have met culturally Deaf people who really despise the word. (The culturally Deaf are identified with a capital “D” to identify a group of individuals who use ASL as their primary means of communication). I’ve often wondered if deaf people (lowercase “d” to identify adventitious deafness) are more accepting of the word because they experienced “normal hearing” for a time and now understand the difference because they are living WITHOUT a sense they once had? I had a Deaf friend at CSD complain that the word “slapped them with a label that meant they couldn’t do something”. I have struggled to understand that. Deaf (and many deaf) people cannot hear. What is wrong with that? Perhaps their thinking is that by accepting that label it requires the adoption of a number of other labels such as “slow”, “dumb”, “broken”, “reject”, “mistake”, and “different”. People who cannot see well without corrective lenses don’t fear being labeled with other words! Why do people with hearing loss fear that? I don’t hear in a normal way. So what?

I’ve heard others mention that the word makes them remember there are things they cannot do. I recently watched a YouTube video of a young Deaf lady who was “going off” on the fact that the only thing she cannot do is HEAR. Anything else she wanted to do she could, and she was not “disabled”. Yet the ADA protects her rights as a Deaf person to insure she has equal access to public events, education, doctor visits, and much more by requiring ASL interpretation so that she may interact on equal footing with those who use their voices to communicate. I suppose I’m a realist. I don’t understand the problem with being aware of what I cannot do. I understand that as a result of Meniere’s disease and hearing with a cochlear implant I will never:

  1. Be a rollercoaster tester.
  2. Wash windows on skyscrapers.
  3. Be a DJ
  4. Be a judge on American Idol
  5. Swing on a swing set (until they come up with an adult size seat similar to the protective seats for toddlers!)
  6. Tune pianos
  7. HEAR without the assistance of my CI

So what? I don’t center my life around this knowledge, nor do I attach any value to “being able to” as opposed to “not being able to”. I chose to enjoy OTHER things. 1) When I go to amusement parks I’m the official photographer. I ride a great number of rides that do not go “around and around”. I can throw a dart that insures I come home with large, ridiculous stuffed gorillas. 2) I can wash windows on lower levels. 3) I can listen to music and “ad lib” as best I can, but if it is a new song I’m lost. 4) I can be a judge on other types of panels. 5) I can climb on jungle gyms. 6) I can PLAY the piano (took 8 years of lessons!). 7) I can hear SO MUCH now as a result of my wonderful CI!

I believe that problem is that OTHERS often attach other meanings to the word “disability”. When they choose to do that, it fosters an attitude of treating a person with disability differently, or of having different expectations of them. Is this where the word “goes wrong”? I welcome your feedback and comments. As long as you don’t swear at me – I’ll post anything even if it disagrees with my own personal opinion. After all, if my desire is that you respect my opinion I can only promise to do the same. So many of you write me to give me “thumbs up”, or “thumbs down” in response to a post. I still welcome feedback privately as well! However, this is a topic I really welcome your feedback for I really am trying to understand everyone’s opinion about this word. I believe voicing opinions about this may help others! So “voice yourself”!

Denise Portis

© 2011 Personal Hearing Loss Journal

We Are All Ambassadors

We are all ambassadors… of SOMETHING.

We are a living, breathing, advertisement of “something”. How you choose to live your life, and how that choice is reflected in your daily interactions with others is so important. We don’t realize when someone is watching, listening, or studying how we live. I think it is so important that people with invisible and visible disabilities live their lives in a way that reflects how their disability doesn’t overshadow their abilities. I suppose being a mother I have always been cognizant of “who is watching”. But now that my kids are grown and in college, they rarely study mom and her life anymore. Others are watching, however.

I shouldn’t be surprised when people stop me to ask questions or make an observation. In spite of having invisible disabilities (“hearing again” with a cochlear implant, and Meniere’s disease), I try to make them visible so that I’m not taken by surprise by not hearing something or getting bumped by “I’m in a hurry” people. I wear “bling” on my cochlear implant to draw attention to the fact that I hear differently than folks with normal hearing. I am with the constant companion of my hearing assistance dog, Chloe. Let’s face it. Nothing draws attention to “something is different about me” more quickly than entering places of business with a service dog. But in spite of my own mom’s occasional teasing of “you’re such a drama queen”, the biggest reason I am visible about who I am is because I’m not ashamed of it. I welcome questions and curious people. Hearing loss is so misunderstood. People seem to understand the culturally Deaf. People born deaf and then choose to embrace American Sign Language as their primary means of communication seem to be understood better than those who are adventitiously deaf and choose technology, surgery, speech reading, and spoken language.

Baby boomers were recently cited as a fast growing “hearing loss” crowd. (Story can be accessed here). Yet young people are part of a new (and alarming) growing crowd of individuals with hearing loss as the result of iPods, concerts, and environmental noises. (Story can be accessed here). I am proud of my cochlear implant and proud that I am now independent thanks to the assistance of my service dog. I don’t have to worry about what I am not hearing thanks to her alerts, and I know if I drop something she will be right there to pick it up for me. I like being an ambassador.

It’s not always easy. Sometimes I’m in a hurry and do not really want to stop to answer questions. That’s why I try to carry my card with me so that people can contact me through email. I also carry information about my cochlear implant and information about Fidos For Freedom. (We discussed how to handle questions when in a hurry at a recent client chat at Fidos For Freedom!) In this way, even when I am in a hurry I can still be a good ambassador for people with hearing loss and people with service dogs. Am I always a good ambassador?

No. No one is perfect. You are going to have “bad days”.

In spite of those bad days, however, I encourage you to remember that people watch you. Some are people who know about your invisible or visible disabilities. Others may be folks who know nothing about you. I love meeting other “great ambassadors”. If we ever “meet up” in public, don’t be surprised by a HIGH 5 from me!

Denise Portis

© 2011 Personal Hearing Loss Journal