To Be Understood Means to Understand

Melissa and her family
Melissa and her family

On 7/23/12, Hearing Elmo welcomed Melissa Sisco, from Alabama as a first-time guest author. You can access that post HERE. Hearing Elmo warmly welcomes Melissa again with a TWO PART post about her own invisible illnesses. Melissa is the mother of two young daughters and was first diagnosed with Meniere’s Disease in 2007. Melissa also has asthma/allergies, a heart condition, weak bones, endometriosis, and diabetes Type II. Melissa admitted that “Meniere’s Disease has been the single most challenging medical diagnosis I have experienced in my 32 years”.

The hardest things we encounter in life can sometimes be the ones you expect and assume will be easy. I am learning to realign and reign in my own expectations/assumptions. When you have struggled with a progressive illness for over six years, say one like Meniere’s Disease that causes hearing loss and loss of balance, you assume your family will support you the entire way. You assume that they will take the time to read the literature, the pamphlets from the doctors or at least even use Google or WebMD. You expect that they will get the hint as you slow down while walking, because your world has begun to buckle and spin. You assume that they will take it in stride when an episode of vertigo strikes and can only be remedied by lying down –for hours sometimes. You assume they will understand that an impromptu dunk in the water will harm your health in multiple ways because you have holes in your ear drums and have to wear ear plugs when you risk getting wet. You expect those closest to you to understand your new world, but the reality is that they don’t. Not at first. You actually have to teach them, or paint the picture if you will. They are not any more adept at struggling with accommodating my illness than I am. It really isn’t fair to expect them to know what was also foreign to me a decade ago. Experience can be the harshest yet greatest teacher.

Recently, a family member commented, “God, you really are deaf!”    Apparently he had been speaking to my deaf ear for several minutes without my noticing, “testing” my “deafness.” I simply turned to him, so we were face to face (even ground for me), and said, “Yes, so if you want my attention, try my right ear or tap my arm or shoulder please.”  All while smiling a really tight painful smile. Now what I really wanted to say was closer to a negative word, followed by an expletive, and ending with Sherlock. But I digress.

I admit I am still in the resentful stage, I resent that I should have to be the one to teach others about my own illness and its effects on my life. I never aspired to be a teacher; I haven’t the patience of those saintly souls. For reasons beyond me God has placed me squarely in a position where sometimes I have to teach, to save my own sanity. It’s just awfully annoying to teach family and friends who I expected to learn a little on their own in the last few years. My disease is nothing new anymore. I’ve learned a lot of my “new normal” on my own, (although I’ve been blessed to have great advice from those who’ve already invented this wheel –ahem Denise, Gayle, Shanna) but I do get downright angry when I have to teach someone something that should be obvious – at least in my opinion. I haven’t been wearing an absurdly expensive hearing aid in my left ear for 4 years just for kicks and grins. As more of my conversational frequency in my good ear wanes I have found that small talk is just no longer my cup of tea. I still avoid public situations in general. I have learned a distinct dislike of restaurants, malls, arenas and movie theaters. I am working on that, but I am a country girl at heart anyway. My country is just a bit quieter than it used to be, which is rather nice sometimes.

I have also found that there is finally a language I am really struggling to learn.  It’s called American Sign Language.  The only one I really need to know, and it makes Hebrew look like a piece of cake. (I would say Greek, but I can actually read that!) I’m quite certain that I appear as if I am under the influence of some sort of psychoactive drug when I’m trying to sign. The nuances of hand gestures completely elude me in a way that centuries-old grammatical rules never did. I can’t even profess to be able to understand it well, either. I get so focused on trying to comprehend one particular gesture/word I miss the next seven and am therefore totally lost. Like missing the pinnacle episode of your favorite TV show and trying to tune in to the next one and catch up – it just ain’t happennin’. I haven’t given up, but gosh is it hard. Bill is a great guy, but you can only make him repeat a phrase so many times before you start having weird animatronic/you-tube nightmares. (Thank the Lord, and Bill, for Lifeprint.)

I have recently also begun to despise the words disability and handicap with the exception of their necessary legal presence. I really just don’t see myself that way. I still do a number of things on my own; to include working, driving, doing basic household chores, etc. Although I despise it, I can grocery shop on my own, most of the time. I just can’t reach for anything on the top shelf, or on the bottom shelf, without relying on my cane or a sturdy wall or post. Sometimes it’s just easier asking for someone’s help. NOTE: Do not rely on shopping carts (that’s buggies for us southerners) for balancing because they have wheels. Really bad idea. Trust me.

I am able to be much more up front with people about my invisible “handicap.” I can flat out tell a stranger that I am deaf/hard of hearing, I need to see their face to understand them or I will ask them to type/write out something complex.  Most of the time this helps, and it is only occasionally that I encounter special people who begin to mimic Dr. Seuss using a bullhorn. Unfortunately, rhyming and loudness are lost on me. And it really annoys my co-workers or whoever else happens to be with me at the time. Sometimes I wish my hearing aid had a neon flashing light that proclaims “Deaf lady coming, repeat, deaf lady coming,” simply so I can save my breath. Sometimes I am saved by the Grace of God in the form of my own eldest daughter. She missed out on my shyness gene and takes the world by storm. She is quite eloquent when I see her shout at the top of her little six year old lungs, “My Mommy is deaf! Don’t you get it?”  All while sighing, knitting those eyebrows, putting her hand on her hip, and glaring at the perceived offender.  (Yes we are working on the politeness and manners thing- but it is easier said than done.)

A lady, let’s call her an acquaintance, I run into sometimes at work, asked me, “What is your cane for? I notice that some days you have it and some days you don’t.”  Another unexpected and unwanted teaching explanation. I replied to her that I have a balance disorder, some days I need it, and some days I don’t. Though you may not always see the cane it is usually nearby, just in case my power steering fails again without warning. She smiled at me with that look of “Bless your heart,” which forces me to fight the urge to strike her with said cane. I despise pity. I don’t want pity. I just want –a little bit— of understanding.

And I have to understand that not everyone else can see my illness, even if a person has known me for thirty plus years. One of my mandatory responsibilities now is to help others understand me as I learn myself. I have to constantly remind myself that, though my illness is invisible, dealing with it is truly a two way street. No one ever said it would be easy.

PART TWO: “It’s Not That Easy” will run Friday, July 19, 2013.

Thank you to Melissa Sisco!

Denise Portis

© 2013 Personal Hearing Loss Journal

In Heaven’s Eyes


What do we look like in Heaven’s eyes?

Many years ago, back in the days I could “hear” and before Sandi Patti’s “fall from grace”, I use to listen to her sing, “In Heaven’s Eyes”.


SIDE NOTE:  Exactly what IS a “fall from grace”?  One can’t FALL FROM GRACE! (said… with a bit of a screech in my voice).  She only “fell” from a legalistic pedestal erected by bozos who think THEY have never done anything in need of “grace”.  She is as human as the rest of us… living life, making mistakes, saved by GRACE!


I have “lively” conversations with a culturally Deaf lady from time to time.  “Lively”, because we really do burn calories in signing our own point of view about a topic.  We have “good arguments”.  The kind of arguments that I hope she thinks about (and blogs about?) as much as I do when we go our separate ways.

We ended up talking about deafness as we often do.  She tries very hard not to hold it against me that I chose to get a cochlear implant.  She succeeds in her attempts… MOST of the time.  However, at times it just gets the best of her and we “argue in a good-natured” way.  She is a very self-assured woman who was born Deaf and has lived her entire life deeply involved in the Deaf culture here in our country.  She worries that so many children born Deaf as she was, are being implanted with cochlear implants.  I think she worries about the future of the Deaf.  Her biggest pet peeve is for someone to behave as if she can’t THINK as a result of her not being able to hear.  She doesn’t feel broken.  She doesn’t feel disabled.  She feels very normal.

I know she is a believer and so teased, “Well what are you going to do when you get to Heaven?”

“Not Deaf in Heaven’s eyes,” she replied in sign.  “Not hearing (pointing to me) in Heaven’s eyes.  Same (as she indicated both of us).

I instantly remembered the title of the song by this title, written by Phill McHugh, and sung by Sandi Patti.  I asked her if she’d ever seen the words to the song before.  (You don’t ask a Deaf person if they’ve HEARD a song before – smile).  She had not.

I got us “back on track” in our conversation, and explained that she misunderstood what I meant.  I explained how there will be no deafness, blindness or other disabilities in Heaven.  I perhaps got a little carried away as I often do, in talking about Heaven… it took me a full minute to realize her face was unhappy.

She explained that she knows and has read that there is no sickness in Heaven.  She has heard pastors teach that “the deaf will hear, the blind will see, the lame will walk”. Everyone will have a perfect body in Heaven.

No pain.

No tears, nor sorrow.

No sickness.

No calories.

GLORY! (smile)

I realized that, as she has no problem being Deaf and does not consider her deafness a disability, “whats to fix” when she gets to Heaven?  She even tearfully told me that if she has to “hear in Heaven”, she’s not sure she wants to go.


Perhaps that is why when someone develops a disability later in life, their perspective is different.  I’ll probably get some “mail” for saying this, but…

If you’ve never heard before, how can you say you don’t miss sound?

My own study of history and the Bible, convinces me to stand firm in my thinking that in the garden of Eden, Adam and Eve could hear perfectly.  I think every part of their bodies worked perfectly.  We were created with ears, the inner parts of which all work together in a wonderful way, allowing us to hear.  It wasn’t until that bite of fruit and disobedience that deafness worked it’s way into our genes. Along with other disabilities, cholesterol, diabetes, birth defects, and

Weight Watchers.

You know you have a real friend, when you can “agree to disagree” and go on from there. It brings me great joy to hear my own young adult children talk about friends they have that don’t believe EXACTLY the way they do. Even better? Rest in the friendship of one who challenges you to discover what you really believe. Hmm.  I’ll save this for another post!

I could tell with startling clarity, my friend and I were at an impasse. Sometimes it’s better to “zip your lips” if you know nothing more can be said in a constructive way.  I guess in this case, I “sat on my hands” versus “zipping”.

Treasuring our friendship, I decided to back up and share the words of that song with her.  She loved the message as well.  This past month, I found out that my Deaf friend is gone.  I only saw her at her place of work, and she lost her job. I need to put on my detective hat and find out where she is now, and see about meeting her for coffee.

I’ll leave “you” with the words to this song as well.  I love it, for it reminds me that Heaven really does view us all the same.  How we look, what we do, where we were born, nor how well our bodies “work”, matters in Heaven’s thinking.  We all need a Savior.

A fervent prayer rose up to heaven,
A fragile soul was losing ground
Sorting through the earthly babble,
Heaven heard the sound.

It was a life of no distinction,
No successes, only tries.
Yet gazing down on this unlovely one,
There was love in Heaven’s Eyes.

The orphaned child, the wayward father,
The homeless traveler in the rain
When life goes by and no one bothers,
Heaven feels the pain.

Looking down, God sees each heartache,
Knows each sorrow, hears each cry,
And looking up, we’ll see compassion’s fire
Ablaze in Heaven’s Eyes.


In Heaven’s Eyes, there are no losers,
In Heaven’s Eyes, no hopeless cause.
Only people like you, with feelings like me
And we’re amazed by the grace we can find
In Heaven’s Eyes.

Denise Portis

© 2008 Hearing Loss Journal

“I’ll take ‘Dead Dogs Can’t’ for $600, Alec”


(Alec) “For $600, the answer is… a video clip”:

(Denise) bites nails… “Umm, ‘What is ROLL MY OWN BLANKET’?”


Kyersten and I attended a play at her college yesterday afternoon.  She attends AACC and had one requirement for ‘Fine Arts Survey’, that she hasn’t been particularly excited about completing.  She had to attend one of the performing art productions and then write about it in a two-page paper.  Somehow, I managed to allow myself to be talked into going with her.  ‘Chalk it up’ to wanting to expose Chloe to new things, while attending something I use to enjoy tremendously – a musical.  “Guys and Dolls” was actually very good and I’m glad I attended.

We arrived early in order to find a good place to sit.  I was thankful I chose to do so, as our tickets had me sitting in an aisle where the floor sloped dramatically towards the stage.  Since I didn’t want Chloe to slide down through the audience during the show, I quickly found a manager and asked permission to change our seats to a section where the floor was level.

We settled into our seats and waited as the opening act was still about 10 minutes away.  A couple scooted around behind us and passed Chloe and I on the left.  The woman jumped a little bit, and slapped a hand to her chest as she looked down at Chloe.  Chloe looked up from a perfect down/stay (perfect because she had already drifted off – smile)

The woman exclaimed, “Oh my… I thought she was DEAD!”

I looked at her with rather bewildered astonishment, and said, “I’m sorry?  What?(I said this while signing “sorry”.  It’s hysterical to me that even when I hear, I start signing if I don’t understand.  Like that clears it up for me?)

She repeated, “Oh, I thought SHE WAS DEAD!

Her husband took her elbow and they moved on down the aisle. Perhaps he wanted to take her to a more private location to HAVE HER HEAD EXAMINED!  I looked over at Kyersten with my eyebrows raised, while Chloe laid her head back down and continued her imitation of a dead dog.  Kyersten has a flair for the understated “duh“.

“Yes,” she snorted rather unladylike, “we carried a dead dog in here and laid it down on a blanket!”  She said it under her breath, but loud enough for me to hear.  (What this lady said must have bothered Kyersten too, as she later whispered, “I think she was just so startled to see a dog, that she said the first thing that POPPED into her head!” She rationalizes well, don’t you think?)

We giggled about it for a few minutes.


SIDE NOTE: I have a very weird sense of humor and my thought process is rather… erm… unique.  I just talked to a trainer at the “Ask the Trainer” booth for the 10th annual Stroll ‘n Roll, “how do you get your dog to fetch something new?”

Tracy B., talked to me about how to teach Chloe to fetch my cane.  (Santa is bringing me one for Christmas because I’ve been a ‘good little girl’)  You start with simply clicking and treating when she TOUCHES what you want her to notice.

So I pictured:

“Chloe… touch the silly lady…”  (Chloe gets up and pushes her nose on the hand of the lady who thought she was dead) Good touch Chloe! (Click… treat…)

Yeah.  Like I said… I have a strange sense of humor…


The performance was nicely done, and I was rather proud of how much I heard AND understood with the help of my cochlear implant.  As musicals have much of the story line put to “song”, it’s rather important to be able to not only hear the spoken lines, but the ones that are belted out to music as well.

Chloe did great too.  She slept through the whole thing with the exception of one scene where a police officer blew a whistle while chasing after the gangsters involved in “Crap games”.  She sat straight up and peered over the heads of those in front of us and watched the chase.  I threw my arms around her neck to talk to her quietly and to insure I could feel any bark getting ready to erupt from her chest.  Fidos For Freedom Inc., does such a great job preparing these dogs for new experiences even from the puppy stage! Chloe simply settled back down immediately after being given the assurance that “all is well”. (Plus the acknowledgment that she wasn’t invited to participate in the chase!)

Sometimes people with disabilities give up on even trying to participate in things they once enjoyed.  They don’t believe that they can make a difference.  They can easily get caught in a vicious cycle of thinking they ‘can’t do anything’ and therefore think ‘everyone should do things for them’.  Don’t get me wrong – there are things people cannot do if they have a hearing loss and have a cochlear implant.  I can’t deep-sea dive, nor hear really well in places with a tremendous amount of background noise.  I can’t fit in a size 4 dress either… although that may be a bit off-topic.

People who hear VERY well, have things they cannot do.  No one in my family has a hearing loss but me, yet they can’t deep-sea dive either!  (OK, I might should clarify that the fact of the matter is, no one in my family can swim!)

But every individual is capable of “something”.  Every person can make a difference.  You know that scary stairwell I talked about here?  In the very corner of the picture, you can see the edge of a wheelchair.  This wheelchair belongs to one of my students.  She was born with a disability that makes things like walking – – difficult.  Yet, she

comes to classes,

leaves her chair at the top of the stairwell,

with assistance goes down the steps,

and then cheerfully grabs her walker and heads to her classes in the basement area.

She doesn’t walk well… but to know her is to love her. She always smiles, and is graceful and beautiful in her performance of music in sign.

I’ve met a number of bloggers through the internet who also have disabilities.  Each and every one of them make a difference,


to someone.

… and you can too!

Denise Portis

© 2008 Hearing Loss Journal

If You Want Me To

Since I recently posted about getting my daughter, Kyersten, ready for college… I wanted to follow-up with a very special post.

Kyersten is an incredible young lady.  I realize I’m “her mom”, but those who know her can tell you that she is very special.  I really look forward to the coming years to see how she continues to grow and mature!

Kyersten has always loved sign language, and grew up as a wonderful CODA (children of deaf adults).  She was a big help to me prior to my cochlear implantation, and has been an interpreter in our church and served in deaf ministries for a number of years.  She has taken 5 levels of sign language, and frankly I can’t teach her much more than I have.  Like me, she recognizes and respects the differences between those who cannot hear and use sign, and those who chose to be oral like myself.  (I know sign and even teach it.  I don’t use it in my everyday life, however, as everyone I know has normal hearing).

She has had a tough week.  A great number of emotional things have happened, and she’s learned some very hard lessons about people.  I wanted to share a video she had taped this week.  The song is by Ginny Owens, and I’ve captioned it for those of you who do not hear well.  Enjoy!

Denise Portis

© Hearing Loss Journal

Why I Don’t Use Sign to Communicate

A hearing loss is often referred to as an invisible disability. Even though I wear “bling” on my cochlear implant, and have a bright red/orange ear mold on the hearing aid in my other ear, one can’t look at me and tell I have a hearing loss.

The reality is, I’m deaf. But… I’m not culturally Deaf. (The culturally Deaf usually identify themselves with a capital “D” for Deaf). Without my cochlear implant, I can hear less than 5% of consonants from only certain individuals. I could go into the nitty gritty details of what my audiogram shows without my implant, but as it’s almost “Greek” to me, I’m sure it would be “Greek” to you.

I needed an assistance dog for a variety of reasons. Although I was warned by my trainers at Fidos For Freedom, Training on April 5th at Fidos I was unprepared for how visible Chloe made my hearing loss. It’s not every day you see someone come into a store, post office, or restaurant with an assistance animal that is very obviously not blind. Chloe makes my implant bling virtually non-existent in the way she so quickly brings to attention the fact that I have a hearing loss!

It’s funny to see people creep closer to read her vest, and then look at me quizzically until they spot the cochlear implant and/or hearing aid.

At Costco this past weekend, I had several strange encounters. Not “strange” like the “X-Files”, but strange in that it was really weird how different people responded to my hearing loss.

The folks at Costco know me well… they should as I spend a small fortune there each month! They know Chloe even better, and sit on their hands so they don’t reach out to pet her wiggly hello. But the customers are all usually “new” to seeing this bright red hound come into the store with her “deaf” partner.

I had a man/wife couple tip-toe up to me and enunciated very clearly (and with extra exaggeration to the point I almost laughed),

“Doooezzzzzz yourrrr dooooog….. hearrrrr…. fooor…. youuuuu?”

I smiled and said, “She does indeed do that! She has the best ears! She helps me with my balance on rainy days too!”

After they picked their lower jaw up off the floor, they talked to me at length about what Chloe does for me and how I came to be matched with such a wonderful companion. I noticed after about 7 or 8 minutes, that the husband was bi-laterally fitted with hearing aids! No wonder they were so curious… and he talked as clearly as I do with no hint of sign language, etc. (I say that carefully, as I do not mean to infer that those culturally Deaf cannot speak clearly… some do so amazingly well… and it’s not a language that is their own! Many Deaf are able to speak well! But those who do… often have a “Deaf accent” for lack of a better way to explain it. Hey! If I spoke a 2nd language, I’d have an “English” accent for sure!) We parted ways after I deposited pamphlets and brochures about Fidos into their eager hands.

I also ran into a fellow Fidos For Freedom volunteer! Small world!

I rounded the corner of the dairy section… and wouldn’t ya know? I ran into a group of teenage girls. They squealed and came rushing over to Chloe. (I wasn’t about to think they were rushing ME!)

One of the girls… likely around 16-years-old or so, began to painstakingly introduce herself to me in sign. “Hi. My name C-r-y-s-t-a-l”. (This took her about 5 minutes to complete). I patiently waited, and then dropped Chloe’s leash, stepped on it, and used both my hands to sign, “Nice meet (you!) Name-mine, D-e-n-i-s-e, This (pointing to Chloe) ” ” hearing-dog, mine. Name C-h-l-o-e”

They squealed and excitedly tried to figure out what I said for about 30 seconds. Then they got nervous. So I put them out of their misery, and voiced in English:

“Actually, I don’t use sign language to communicate. I am “oral” and use English just like you! My name is Denise and this is my hearing dog, Chloe.”

The sweet young lady who had been brave enough to sign blurted out, “Oh! Well WHY? If you can sign, why would you speak English?”

Chloe alerting to the timer in the classroom so I know class is \As a teacher of ASL (American Sign Language) I had one of those moments… the kind where you hear yourself speaking in a lecture that you did and it echoes in your mind during the moment it actually hits you! Of the 34 million Americans with hearing loss, less than 2% sign. Yet, hearing loss is almost always equated with sign language.

I took a few minutes to explain that everyone in my life has normal hearing, and everyone uses oral English. My daughter’s boyfriend, Mark, has normal hearing. (How can I get to know HIM if I can’t speak English and and use my bionics to hear his responses?) I am the only person with hearing loss in my family, the only one in my church, and the only one at work. I know and teach sign language, because I made a very dear friend in college who was Deaf. The college just happened to have a “College of Deaf studies” as well. I learned sign language to talk to her, I later used it in my church to serve in a Deaf ministry… and then I lost my hearing. If I only signed and didn’t choose a cochlear implant, hearing aids, and reading lips to communicate… I would not have very many people to talk too. Sure… they can learn sign language, but I’ve never been convinced that my world would do anything other than become a lot smaller. (Besides… my husband is truly manually dyslexic! He’s tried to learn for years!)

I teach sign language because I do love the Deaf. I have numerous Deaf friends still! I hope to instill a passion for the language in young people who will go out and make a difference to someone who is Deaf. They may be interpreters or teachers of the Deaf, or… they may only have a one-time opportunity to be a blessing to a Deaf person. I love sign language! It’s beautiful, and many times “says” what spoken word cannot. I “sing” in sign… (I am after all – deaf! Truly, and fully “tone deaf”!)

I realized I had begun to ramble as I saw the girls’ eyes glaze over. TMI!

I know sign language, and can teach it as well. I don’t use sign language to communicate 98% of the time. (Likely, one of the reasons my receptive skills are so poor).

Having Chloe with me 24/7 is like putting a spot light on my disability. And… I’m OK with that! I love to talk about hearing loss. I love to talk about assistance dogs! Heck! I love to talk!

Denise Portis
©2008 Hearing Loss Diary