Category: Nucleus Freedom

Exercising My Right to VOTE

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Since my husband wasn’t going to get home until around 7:15 and the polls are crowded right before they close, I chose to walk to our polling place today. It was a beautiful, crisp, cold morning and required very little encouragement to get Chloe to make the long walk to go vote.

About a block from the school where we vote I stopped to get Chloe’s vest out of my bag and “got her dressed”. She looked at me sort of quizzically for I don’t usually “dress her for work” on a walk. She was immediately “all business” though and stayed in a proper “heel” instead of her “I’m on a walk meandering trot”. I entered the school cafeteria and stopped to remove gloves, scarf and unzip my coat. (Hey! I said it was CRISP!) While waiting in line a nice lady asked if she could pet Chloe. Chloe’s body always wags, “yes, please”, but I have to ask people not to pet her in vest in public places. Days my balance is “off” only requires her reaching for a friendly hand that I’m FLAT ON MY FACE. So I pleasantly explained why I couldn’t allow her to say hello, and continued waiting in line.

I didn’t have to wait long. Mr. “I really need a smoke” was sitting waiting for me and motioned me to come over. In this big cavernous, noisy room with hard floors, walls and high ceilings, I had to struggle to hear. Ever try to speech read someone who was chewing gum like a cow? This poor guy really needed his nicotine fix. I asked for a repeat on the birthday question 3 times. I finally pointed to my mouth and said, “I can’t understand you I’m afraid. Would you repeat that once again?”

I guess it was the hound dog head resting on the table top, bright bling on my CI and the fact that I asked for a repeat 3 times that he finally got that “light bulb” look on his face. He looked up, stared me square in the eye, moved his gum to his cheek, and clearly enunciated, “Birthday month and day?” Well WHEW.

Now I headed to a shorter line waiting for a poll volunteer to show me to a booth. The lady standing there waiting with me seemed friendly. She looked at Chloe, looked at me and said, “Oh wow! I saw you speaking to Earl! I can’t believe you are deaf because you speak so well!”

“Yes, most Americans with hearing loss actually speak very well and do not use sign” I explained.

We stood there waiting silently but I could see a funny look on her face like she was about to bust. The polling folks aren’t really suppose to have a conversation with you. Since I was ‘ready for it’ though I heard her whisper, “My husband can’t hear a thing even with hearing aids. It’s driving me bananas“.

Since she was trying to be unobtrusive I lowered my voice and said towards the floor, “Well I hear voices very well now that I have a cochlear implant. They require a very simple surgery and most folks I know do really well. You should have your husband look into it”.

She looked thoughtful and motioned to another worker to show someone BEHIND me to the next open booth. Again talking to the FLOOR she whispered, “Well I don’t know if he’d go for that”. (pause) “Does the dog come with the implant?”

I looked up to catch the wink so I just grinned and shook my head. “Sadly, but no!” I whispered back. I told the floor, “Well you should check into the Hearing Loss Association of America. They have a terrific website. You both could find out much more”.

Finally she could not delay any longer and showed me to an empty booth. “Push the card all the way in until you hear it click”, she said in a normal tone of voice. She turned to leave me to my voting and whispered, “Thank you!”

I took 15 minutes to vote and Chloe and I both got a sticker. (BIG GRIN)

On the walk home I couldn’t help but send up a quick prayer for this lady and her husband. Remembering how hearing loss once drove my own loved ones “bananas“, I really felt empathy for them. Hopefully she will follow through and find out more information about HLAA. I had to grin to myself as we headed up the last big hill towards my neighborhood. I went out to vote and ended up being pro-active about my hearing loss once again.

Funny how our own circumstances allow us to do that, isn’t it? I felt overwhelmed with gratitude to be able to have a whispered conversation to someone random that obviously had a “need”. It reminded me of one of my favorite “lists” that I periodically put around the house when needed.

Alice Gray‘s “Treasures of the Heart” seminar:

How to Put a Wow in Every Tomorrow:

1) Develop an attitude of gratitude: When you are experiencing tough times, remember the blessings in your life. It’s like sprinkling sunshine on a cloudy day.

2) Encourage others: When someone has a goal, most people point out the obstacles. You be the one to point out the possibilities.

3) Give sincere compliments: We all like to be remembered for our best moments.

4) Keep growing: Walk a different path. Take a class. Read something inspiring.

5) Give the gift of forgiveness: Forgiveness is a blessing for the one who forgives as well as for the one who is forgiven.

6) Take care of yourself: Exercise, eat a healthy diet, sing, and dance a little bit every day.

7) Do random acts of kindness: The most fun is when the other person doesn’t know who did it.

8.) Treasure relationships: Eat meals together, take walks, listen. Share laughter and tears. Make memories.

9) Share your faith: You can wish someone joy and peace and happy things, but when you share your faith–you’ve wished them everything.

Hope you went out to vote today!

Denise Portis

© 2010 Personal Hearing Loss Journal

Hook Up – What Does It Mean?

Published on by hearingelmo4 Comments

 

... even Elmo was surprised!

 

As I prepped for the blog post this week I found myself astonished. I’m not often ASTONISHED, and even more seldom “at a loss for words”. After all, I’m a motor mouth. I was going to blog about “Hook Up Day”, but started noticing the phrase in odd situations and places. It didn’t take me very long to discover that “hook up” to me meant something entirely different to other people.

I heard the phrase “hook up” on a BONES episode that my husband TIVO’d for us to watch. In the episode… it was very clear that “hook up” meant to meet for the purpose of having sex. I’m fairly sure my mouth dropped open. As a matter of fact – I’m certain. My husband turned to me and said, “Your mouth is hanging open! What’s up?”

With “fear and trembling” I tentatively managed to squeak out, “Ummm… what does HOOK UP mean?”

My husband could tell the response was important so he properly managed to hide a grin and look serious as he responded, “You mean in this show? It means meeting up to have sex”.

Seeing all my preparation for the post swirling around an empty, flushing commode in a colorful mental image, I stammered out, “Well… well… can it mean anything ELSE?”

Survey SAYS…

According to my 20-year-old daughter the phrase can mean a number of things. Yup, it can mean “sex”, but most of the time when she hears it is when it means other things. After all (she assured me) she doesn’t hang out with people that go around having casual sex. She informed me that “hook up” can mean to just meet up with someone… an arranged meeting.

My 19-year-old son said that he has only heard it in the entire phrase of “let’s hook up later and…” (fill in the blank). He insisted (and rightly so being that he was talking to ME) that it never meant sex in the crowd he hung out with at school.

I asked a “30-something” friend her opinion and she said that she has only heard the context of “hook up” meaning sex if you were actually talking about the “crowd” that engages in casual sex. “For the rest of the planet”, she grinned and explained, “it simply means to get together with someone!”

Well WHEW. But…

Isn’t it Interesting?

… how interesting is it that who you ARE may change the meaning of a phrase for you? Prior to losing my hearing, “hook up” may have only meant that we were getting our telephone or cable “hooked up”. Now that I identify with the “hearing again” crowd, the phrase means something much more profound. I hear some CI recipients call their special day – “activation day”, but I still hear “Hook Up Day” a great deal. One “ol-timer” recipient may ask a newbie, “When is your HOOK UP day?”

My own “hook up” story can be found here. I never tire of watching it as I am very aware of all the emotions flooding through my body as I sat there being “hooked up”. My eyes open and stare in amazement as I hear from my left ear for the first time in decades. One of my students told me last week:

“Mrs. Portis, you are so cute when you hear something because you turn your head and look really thoughtful with your eyes SO BIG with surprise!”

I’m not sure I like the description of being “so cute” (grin), but am not at all shocked to hear I LOOK as surprised as I feel when I hear something out of the ordinary. Sometimes it is hard to not make a big deal about it. Making a big deal about it may bring embarrassment to someone else. Examples?

1. One week a student asked to be excused to go to the bathroom. We are in a separate building from the main structure and so we have our own bathroom. When the student was finished I heard the toilet flush from the other room. I paused (and know my eyes got very big) and had trouble continuing with my lecture without missing a beat. I came very close to exclaiming to the student as he re-entered the classroom, “I’m so excited! I just heard you flush the toilet!”

2. Standing talking to the mother of one of my students (near lunch hour), I distinctly heard her stomach growl. Her face pinkened just a bit, but she continued on as if nothing happened. It was all I could do to not throw my arms around her and shout, “I heard your stomach growl! Yipeee!”

When a cochlear implant recipient is activated for the first time (and all subsequent mappings), the individual is literally HOOKED up to the computer. The audiologist can test various electrodes, programs, and “tweak” settings to maximize and individualize the processor to the person. As the result of being a part of a wonderful network of “hearing again” people, I have learned that not everyone has a wonderful Hook Up day. Sometimes it is frustrating… even disappointing.

Various causes of hearing loss, number of years the individual was without sound, and concurrent health factors can influence Hook Up day. What I love, however, is that it always gets BETTER. Those who may have a very disappointing Hook Up Day, eventually (and with a lot of hard work and aural rehab) get to where they are very happy with the results. I have met very few who regret getting a cochlear implant. Much more frequently the “hearing again” people I meet only wish they had done it sooner.

I have been in contact with numerous “hearing again” people who have only recently been Hooked Up. The first weeks and months can be very frustrating. Especially for those who have some memory of sound and are disappointed that it isn’t perfect hearing… right away… just exactly as we remember. The robotic squeals and whistles, “tin-like” voices and mechanical whirring can be very disappointing at first! I always encourage people to 1) don’t ever miss a mapping, 2) insist on 3 -4 visits the first month, and 3) take lots of notes so that you can describe for your audiologist exactly what you hear.

Identifying with a “Crowd”

Isn’t it interesting how we identify with a culture group, or crowd of people that are like us? Perhaps you are into “going green”,  “breast cancer awareness”, some specific disability group, religious identification, or political affiliation. A group may have a specific language and use of words that others outside the group do not use in the same manner. I think these words, phrases and language help to define the group in many ways. If you are “hearing again”, the phrase “hook up day” is simply a natural default to the day in which a cochlear implant was activated. What are some of your “default” phrases that are indicative of a culture group or identification that you have? We all have them!

Denise Portis

© 2010 Personal Hearing Loss Journal

We’ll Never Be the Same

Published on by hearingelmo2 Comments

“observe a leaf falling from on high…listen to the sounds it makes as it touches branches on the the way down…then the sound of landing. I didn’t realize until today that I can do that. I cried. Good thing no one was there. 🙂“

A friend of mine penned the above words in her “status message” on Facebook, yesterday. Honestly? When I read the words, goosebumps erupted on my arms and neck and I felt an overwhelming emotion well up in my chest. I sat at my desk and “cried like a baby” if you must know. Deep, wrenching sobs that shook my entire body and caused my assistance dog to lay her head on my knee and look imploring up at me … asking to “help” as best she could.

Why?

Unless you’ve lost something and regained it through surgery, rehab, hard work, and perseverance you could never understand completely. When an individual chooses to be surgically implanted with cochlear bionics, they can only do so after their “natural hearing” has reached a point that other assistive devices provide little help. Many resign themselves to not ever hearing again “this side of Heaven”. To regain that and as an added benefit, the ability to interact and communicate with others, strengthening old relationships or forging new ones, repairing self-confidence and esteem, all “sweeten the deal” and make the decision even more life–changing. For some, aural rehab goes very quickly, while for others that first year can be frustrating and challenging. In the end, we’ll never be the same. We will never take for granted our hearing and the ability to listen to the sounds around us. One becomes a part of a “family” of other folks who are “hearing again” as well. We get it. We understand. We’ll never be the same.

The Internet has changed our world, but there are some unheralded benefits of having the Internet. It has provided a connection for people with disabilities, health concerns, or chronic illness. Support groups and message boards exist for every type of health issue.

Those with the invisible illness/disability of fibromyalgia or chronic fatigue syndrome are connected to others who live with the knowledge that today things might be pretty good – but tomorrow you may be bedridden. Those with chronic, hard-to-explain pain disorders can communicate with others who live the same life and share the burdens and triumphs of living with a disease that WILL NOT squelch their inner spirit.

Those who have a loved one that has survived a traumatic brain injury can find others who “miss the person they once loved” and are “learning to love the person left behind”. They can share successes and set-backs, fashioning relationships with other parents, spouses and loved ones who understand because they LIVE IT.

Individuals who live with mental illness can connect with others who understand the stigma and prejudices. They can connect with others who are SURVIVORS.

People (finally) diagnosed with the new epidemic of Lyme disease can find a community of people who have learned how to talk to their doctors, discuss holistic practices that provide relief, discover medications and lifestyle changes that can make a difference in the number of recurring flares, and how to remain positive and proactive in living with the illness.

I have a cousin in the latter stages of treatment for breast cancer. Her “voice” has changed throughout this process and I can tell by reading her penned words that she has a new fascination, anticipation and appreciation for life. She will never be the same.

I think we are slow to recognize how hardship, tragedy, trials, and adversity can provide the surprising and unexpected benefit of a permanent change in hearts, minds, and bodies. For many of us our very foundation has been rocked and rebuilt. Life is different. Sweeter.

We’ll never be the same.

Denise Portis

© 2010 Personal Hearing Loss Journal

Who Is That Person?

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The bathroom downstairs is decorated with cats. Lots of them. (Yes I know… decorating a bathroom with “cat stuff” is unusual, but it is what my cat-loving children picked out!). The above picture hangs in the bathroom near the sink. As a result, I’ve given a lot of thought to this painting!

Who IS that?

This morning I was getting ready and caught sight of myself in the mirror. I had already fixed my hair, put on my make-up and “made pretty”. Yet, I was taken by surprise at what I saw in my reflection.

It’s raining today. We really need it too. Yet… I really dread rainy days. I usually know it’s raining even before I roll out of bed in the morning. I get this “sense” that all is not right. Weather systems do a number on my balance and I walk like a drunken sailor if bad weather prevails for more than a day or two. Looking at my reflection I could see IT on my face. Fatigue, dread, worry, and acceptance of the unavoidable. There it was in the reflection in the mirror. You would have to really know me to notice. Something in the eyes… tension in the facial muscles. Since I know myself pretty well (grin)… I could spot it right away.

Am I Defined or REFINED by Acquired Disability

The people I find most difficult to be around are those who “knew me when”. Folks who grew up with me – my parents, siblings, and family members – have a hard time being around me I think. I’m not who I was. My family are spread out all over the United States. We are currently in four different states, and unfortunately this necessitates rather infrequent visits. (Thank goodness for Facebook, email and SKYPE so that we can at least touch base virtually). My immediate family (husband and children) transitioned along with me as my life gradually changed from “what was” to “what is”. It seemed less like CHANGE to them, for life changes gradually grew who they were as well. However, when you haven’t seen someone in a very long time and then have the opportunity to be with them, changes are not only obvious they can be surprising!

I’ll never forget shortly after receiving my bionics and cochlear implant, I was visiting my sister while I was in Texas on business. I reached up to remove my CI to hand it to her so she could look at it because she seemed a trifle intimidated by it. She screeched, and said, “No, NO! Don’t take it off!” I got the impression she thought I was going to remove it from my brain or something! As if removing it meant you could peer down into the cavity of my skull! Her grimace and horror at what I was trying to do really threw me off! At first I was REALLY hurt (I’ll just be honest here). I couldn’t believe that in something so life changing for ME, that someone this close to me had done so little investigation themselves about what my having a cochlear implant would mean. But honestly? Researching and finding out more information about the CI that would change MY life is not HER job. I should continue to be the best DENISE I can be, using whatever means necessary to “do a good job” at that. It isn’t her job to completely understand what that transition will look like nor to completely understand the technologies I use to cope and HOPE.

Adaptation is “A change by which an organism or species becomes better suited to its environment” . My family and I have made adaptations. I don’t believe my disability DEFINES me, but it’s ridiculous to pretend it isn’t part of who I am now. I do believe it REFINES me. This isn’t a NEGATIVE thing. I’m still me… but a BETTER me because of the things I’ve adapted to as the result of having an acquired disability.

But sometimes… like this morning… I do a double-take when I see IT in the reflection of the mirror. I suppose it’s because there are days – thankfully few and far between – where my hearing loss and Meniere’s disease get the best of me. It would be so easy to just turn around and crawl back into bed. Heck! Honestly? There are days that would be the WISEST thing to do! I think of the people I know who are living with Lyme disease, Chronic Fatigue Syndrome, Fibromyalgia, MS, HIV, or cancer. Invisible disabilities and chronic illness that, unless you knew the background and testimony of the person standing in front of you, one would never know the courage it takes to live life each and every day with some semblance of normalcy.

Standing and looking in the mirror – you may notice a little bit of IT peeking out at you from time to time. I walked away from the mirror this morning totally OK with the fact that the stress of my life was showing a bit in my reflection. I don’t have to let how I FEEL influence the way I BEHAVE. Frankly? I think every person has days they have to try a little harder to PUT ON A HAPPY FACE. They don’t have to be people who live with invisible disabilities. It’s normal to have bad days. And normal? Well… that’s just exactly how I want to be.

I’ll leave you with a super song that I discovered long ago when that animated movie “Mulan” first came out in 1998. It wasn’t until I saw the lyrics for the first time that it was really driven home – the truths of reflection for every woman, every person, every individual living with invisible disabilities or chronic disease. When will my reflection show, who I am inside?

Truthfully it shows every single day. You just have to look harder on some days than on others. I don’t ever stop being ME though. I usually walk away from the mirror pretty satisfied with the evidence of things not seen on the surface. May we all be great reflections of who we are INSIDE…

Denise Portis

© 2010 Personal Hearing Loss Journal

“People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.”(Elisabeth Kubler-Ross)

Prepared For It?

Published on by hearingelmo5 Comments
We simply do not take ANY chances

“The dog days of summer”… whew! Has it ever been hot here in my home state! I could take a repeat of last winter’s snows, believe me! I’ve always preferred 3 feet of snow to 3 weeks of 95 + temperatures! Because of the heat, Chloe and I have been forced to walk pretty late at night. At “twilight” it is dark enough that it isn’t safe to be walking. At least not in my neighborhood where people go 40 mph in a 15 mph zone.

To placate my husband, I make sure Chloe and I are decked out in a number of things that are reflective. I wear a reflective vest, and Chloe a reflective collar. The leash I carry actually lights up near the handle end, and it also sports “lighted bling” of various kinds. I’m sure from a distance we must look like Santa and his team of reindeer! Small price to pay … this GLOW IN THE DARK preparation — for a safe walk! I didn’t anticipate having to walk so late at night, yet preparation has made all the difference.

I’m safe.

It is cooler.

We walk faster.

No… really! Not sure why that is, but the big “loop” we walk is usually 7-8 minutes faster than if we walk when there is more light. Perhaps because we aren’t having to stop to get Chloe re-collected after startling a bunny? Either the bunnies have an early bedtime, or they simply are not seen as easily.

Just Because it Wasn’t Planned, Doesn’t Mean You Don’t PREPARE

I know of very few people who planned to acquire a disability or to be diagnosed with chronic illness. I have become acquainted with people who have progressive hearing loss or are deaf, people who have lost their eyesight due to Usher’s Syndrome, people with MS, Parkinson’s, Meniere’s disease, and Chronic Fatigue Syndrome, people with fibromyalgia and many others who find that they are living a life they didn’t exactly “sign up for”.

So what do you do?

Give up? Try to get a refund? Sue?

Well… most of the people I know “deal with it”. They do so in their own way, and for some it may mean working through it. Working through it for some people may mean that they have a pretty long period of time either denying the problem or grieving the problem. Each of us do this, but some spend more time on these steps than others. That’s OK. I get really aggravated when I hear someone tell a person learning to live with changes that affect their life that they need to “get over it” and “get on with life”. I guess I’m aggravated because the person saying that usually does not have the same diagnosis as the person they are preaching at! However, I do sometimes see someone who DOES share the diagnosis “preach” the same. Just because YOU did not grieve your hearing loss — or whatever it may be that you are dealing with — doesn’t mean that other people deal with the loss the same way.

Once you do work through that process, however, you can start to prepare. Preparation is key. For me preparation looks like this:

1. I always have #13 hearing aid/cochlear implant batteries. I carry some in Chloe’s vest, the car, my pocket book, and Chloe’s treat bag. I have them in my bedroom and my office.

2. My cane is right by the front door. If it is rainy or if there has been a pressure system come into the area, having my cane “handy” insures I actually take it with me out the door. No one “messes” with where I put my cane. If you move it, you risk life and limb (grin).

3. I leave early to arrive early. Let’s face it. It takes me longer to get to where I’m going. For one thing I travel with an assistance dog, and I have to spend a couple of minutes allowing her to “do her thing” before going into a public place. I have to load her up safely in the car. I have poor peripheral vision on one side so I drive the speed limit in a world where no one else does. I allow extra time to get to places ON TIME. Sure! I’m early sometimes, but I am rarely late.

4. I never walk out the door without my cell phone… and I am ZEALOUS about making sure my phone has a full charge. As a matter of fact… I have my cell phone on my person almost every waking moment. (Perhaps something to do with having a kid in college in another state now?)

5. I make it a PRIORITY to get eight hours of sleep. This is so important, I schedule myself to get at least eight hours. Heck! I’ll be honest… I actually do better with nine, so if I can schedule that I do! Having a cochlear implant is terrific! I love being able to communicate without having to actually be in the same room with someone. I’m fairly certain it’s not AGE… it simply takes a LOT of brain power to communicate now! Who’d have “thunk” that communicating with a hearing loss could be so exhausting. It doesn’t seem fair that no calories are burned! It is mentally (and sometimes emotionally) exhausting to communicate with hearing loss. If I get less than eight hours of sleep, it is very noticeable that I do not communicate as well. Fatigue will do that.

6. I make sure I travel with information about service/assistance dogs. You never know when you may have access issues. As a matter of act this has been a pretty prevalent part of our lives lately. (See the links here (with a video too!), here and here).

7. I avoid sodium, limit caffeine (something I find nearly impossible), and take Manganese! These three things I have found to be very helpful in limiting the effect Meniere’s disease has on my own life. Manganese is hard to find too! (Magnesium is plentiful… Manganese not so much). Remembering to make these “BIG 3” a priority, really makes a big difference in how severe my symptoms may be when an episode hits.

8. I memorize and use lines that best describe my communication issues and how I can solicit positive responses. These include:

A. You speak wonderful English! However, I have a hearing loss so I have trouble with accents. Could you repeat that a little slower please?

B. I have trouble understanding in background noise. If you would face me when you talk, I should be able to speech read and hear with my CI (point to it) and hear you much better!

C. I missed what you said. What I heard was (and I repeat the parts I heard). Could you repeat what I missed? (This way folks aren’t having to repeat EVERYTHING).

D. It’s so noisy in here that I am having trouble pulling your voice from “all this chaos”. Can we step over there (points) to a quieter spot? I really want to hear what you are saying.

E. Do you mind if we sit down? My balance is “off” today and if we sit it will give me one less thing I have to deal with!

F. Let’s step over here to talk so that I can put Chloe in a “safe place” so she won’t get stepped on.

There are many more… but it pays to rehearse and have specific examples to communicate to others your attempt at being proactive to help yourself. I have never… not even one time… had someone respond to these types of explanations in a negative way. Preparing explanations like this keep me from slipping and offending someone by spouting off:

A. Geesh, your accent is killing me! I can’t hardly understand what you are saying!

B. Would you quit mumbling and speak slower please? Gee whilackers!

C. HUH?

D. WHAT DID YOU SAY? (In a super loud voice trying to drown out all the noise. Now ever eye is on you and the person who was trying to talk to you).

E. (Denise is bumped and falls to the floor in a tangle of arms and legs… including doggie legs).

F. STOP STEPPING ON MY DOG!

Preparation = Ownership

In preparing and planning, a person with an acquired disability or chronic illness in essence choose to take ownership of their own life. It isn’t another person’s responsibility. It is ours. What ways do you prepare and “own” your life to better live with a disability or chronic illness?

Denise Portis

© 2010 Personal Hearing Loss Journal


Divine Deposits

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~ All the blessings we enjoy are Divine deposits, committed to our trust on this condition, that they should be dispensed for the benefit of our neighbors ~  John Calvin

My young adult children enjoy going to the bank with numerous paychecks and depositing their money into both savings and checking accounts. I envy them sometimes, for my husband and I certainly cannot wait to deposit numerous checks. Instead we worry about looming car repair bills, vet expenses and other various “unexpectedness” that ensures every paycheck is automatically credited to our account.

This week I have been thinking about “divine deposits”, perhaps because I’m feeling DIRT POOR but more likely because I’ve experienced what it means to have someone deposit part of themselves into my life. No matter how hard things are in my life, I can always “count my blessings”. I’ve experienced financial crisis, loneliness, loss, fear, disability, heart break and depression; yet, I’ve never been completely bereft of blessings.

An old hymn once sung with some frequency before churches switched to more contemporary worship music, is entitled “Count Your Blessings” and written by Johnson Oatman, Jr. The first verse:

When upon life’s billows you are tempest-tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.

Bing Crosby use to sing a song entitled, “Count Your Blessings Instead of Sheep”. The first verse, crooned by this music legend, is:

When I’m worried and I can’t sleep
I count my blessings instead of sheep
And I fall asleep counting my blessings
When my bankroll is getting small
I think of when I had none at all
And I fall asleep counting my blessings

I’m certainly a believer in considering the “good” and recognizing the power of blessings perceived. However, I believe John Calvin best described the REASON for our blessings. Blessings aren’t actually blessings unless we turn around and do something with them. If we simply receive a blessing and let it “sit in our soul bank”, the value of that deposit plummets.

So HOW Do I Bless Others?

Oh sure! Some people use anonymous gifts of money to be a blessing to someone else. However, I believe that blessings are rarely monetary. The cash value of blessings may be low, but the eternal value is considered priceless!

I recently stood in the hospital room of a dear lady dying of cancer. She could no longer speak because of the difficulty in breathing. Yet even in her pain-wracked body, you could see the yearning in her eyes to “give back” to those visiting her crowded hospital room. Each person who entered was greeted with a small smile, warm pat on the hand and dazzled by the twinkle in the eyes of this “walking blessing”.

I know of people who have adjusted to a life-changing, unexpected hearing loss, who cheerfully participate in the Walk4Hearing so that others can benefit from the local and national support of the Hearing Loss Association. Cochlear implant recipients often become mentors to others who are thinking about being surgically implanted with these bionics, or are new to “hearing again”. An investment is made in the life of someone else… an investment of time, advice, friendship, and understanding.

The trainers at Fidos For Freedom are volunteers. Countless hours of dedicated training and expertise are poured into every match of client and canine. The trainers are not paid for their work… at least not on THIS side of Heaven. I believe these compassionate trainers do what they do because someone else invested in them… they are simply “paying it forward”.

Who Are Your “Neighbors”?

“All the blessings we enjoy are Divine deposits, committed to our trust on this condition, that they should be dispensed for the benefit our our neighbors.”

Sure, the neighbor that benefits from your own “dispensed blessings” may be someone who actually lives nearby. Yet a ‘neighbor’ is often someone you have never met. It is possible to even be a blessing without being consciously AWARE. This is the result of living a life in such a HABIT of kindness, that blessings just ooze from your pores and influence complete strangers!

“Pay it forward”. To whom, you may ask? Anyone you can! I’ll leave you with one of my favorite commercials:

Denise Portis

© 2010 Personal Hearing Loss Journal

Do Not Put it Off!

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This week marked the end of my son’s life as a high school student. In a couple of weeks, my parents will be here to celebrate at his graduation ceremonies for Chieftain Christian Academy. Although Chris did most of his senior year at a local community college (since he goes free thanks to “Dad” working there), he still did a couple of classes at home. I’ve been more “hands off” in his education this year, but still had the opportunity to make sure he was logging hours for that 1/2 credit of Bible he needed. I was still his “teacher” for Geometry, something we put off far too long! I was still busy grading papers, generating paperwork for our co-op, and preparing lesson plans for the kid.

Now the “kid” is done, and I find myself asking, “What do I… want to be when I grow up?” My life has pretty much been on hold for twenty years, in spite of working part-time as a teacher throughout. Every school year revolved around the kids, as did every activity, field trip, book purchase, and support group meeting. Now we are “done” with this chapter in our lives and I once feared I would be left feeling deflated.

But… I have a plan of action. That is part of the reason I have been going to school part-time. I’ve been taking 6-9 hours a semester of graduate level courses in Psychology. I’m set up to complete a Master’s program at the end of 2010.

Looking Back

In spite of all of these years of concentrating on my family, I really didn’t think there would ever be a day I could look to my own dreams. It’s hard to believe that it has been almost twenty years since I first began to notice a dramatic change in my hearing. In the beginning it was so hard! Even my own parents and siblings had difficulty believing I was really losing my hearing. After all, when I was being raised at home, I only had a mild hearing loss in one ear. It didn’t make sense to them that ten years could make that much difference in my hearing. I remember one of my kids coming home from Colorado after visiting family, visibly upset because someone had told them that my hearing loss must be “put on”… that it wasn’t real. They had no idea how to respond to the lack of belief in acquired disabilities. They knew I couldn’t “hear” in the dark (since I speech read). They knew how frustrated I was when my hearing aid battery would die. They knew how terrified I was of the phone and how I was slowly dropping out of activities at church since I couldn’t hear. I remember talking to my little sister on the telephone prior to my cochlear implant surgery.

She wanted to know why I would consider surgery and take that risk. I remember staring at the phone incredulous at her question. Here I was reading captions from a Cap-tel phone, in order to even know what she said… and THAT wasn’t 100%. I explained how minimal the risks were to cochlear implant surgery and tried to explain how desperately I WANTED MY LIFE BACK.

Looking Ahead

I didn’t let their reservations stand in my way. Thankfully, my immediate family understood the struggles I faced each and every day and were so supportive! Other late-deafened adults were encouraging and enthusiastic about my surgery. Getting a cochlear implant allowed me to dream again. Because I can hear as well as I do, I look forward to giving back in some way… of doing something outside the home. Don’t get me wrong… I have loved being a keeper of the home and the opportunity to spend so much time with my kids. However, I really thought that at the end of this time I’d be facing an empty nest and feeling unnecessary. Once I could “hear again”, everything changed. I’m at the end of this journey and at the beginning of a new one! I’m feeling rather hopeful, excited and NECESSARY.

I suppose if the posting this week had a POINT, it would be this:

Do you have a hearing loss? Do hearing aids and other assistive devices no longer help you very much? Have you been evaluated and been told that you qualify for a cochlear implant?

DO NOT PUT IT OFF.

The risks are minimal, the pay-off is HUGE. It has been five years since I was activated (May 13, 2005). I have no regrets other than I waited as long as I did. I qualified for a cochlear implant three years before I finally went through with the surgery! I’m dreaming again. I’m excited about the future. I have plans, goals, and am slowly but surely “getting there”. I can hear with this bionic ear of mine!

Denise Portis

© 2010 Personal Hearing Loss Journal


5 Year Mapping at Johns Hopkins Hospital

Published on by hearingelmo7 Comments

Today I went to Johns Hopkins for my 5 year mapping. It always feels surreal when I go, for five years is simply not enough time to pass that I have already forgotten what it felt like not to hear. As I go in the parking garage, I can clearly hear the ticket machine ask me to take my ticket with me so that I can pay before exiting. When I approach the hospital, I can hear the revolving door “clicking” as it slowly rotates inward. I clearly hear the “ding” of the elevator as I wait for one to come to the first floor. None of these things were discernible to me 5 years ago. I guess you could say my ears became “reborn” on May 13, 2005.

Below is my audiogram 5 months before my surgery. It shows I had a 90 dB loss in my right ear and a 98 dB loss in my left. My left ear is the one I decided to implant.

Audiogram 11-4-2004

Below is the audiogram from today. My audiologist is one of my favorite people. She’s very easy to talk too, and VERY good at what she does. She created a new program in my “P3” slot that I’m going to work with to see if I can hear my son’s voice any better with in comparison to my normal program. In the sound booth… I actually tested “best” with the lower tones, so it could be that I’m going to have to start fussing at my son to project a little better with that deep voice of his! (Look up when you talk… don’t have your face buried in your laptop).

She doesn’t test my right ear anymore, but you’ll note that my left ear (once a 98 dB loss) is now testing at 15dB loss. Better yet, check out the bottom where it has my words/Phonemes and HINT sentences testing in quiet/noise!

Audiogram 5-7-2010

My audi is never “pushy” but she reminded me that should I ever wish to consult with Dr. Niparko about getting a 2nd CI, that I can just call and make an appointment. Right now with my balance issues, I just do not feel the need to pursue that as I’m “hearing” so well. Maybe… SOME DAY.

Check out my May “bling”. Remind you of anyone?

May "Chloe" bling

Denise Portis

© 2010 Personal Hearing Loss Journal

It’s a Shame You Don’t Burn Calories

Published on by hearingelmo2 Comments
Darn, but his voice is changing YET AGAIN!

Geesh, I’ve had a tough week. I hate to complain because I am aware that my frustrations in no way compare to what some folks are going through right now.

I mean, everyone in my family is relatively healthy; we’re employed; doing well in school; have connections with people we care about… but let’s face it –

We can still have a tough week in spite of how well things may be going generally.

Part of the reason I enjoy connecting with people through their blogs, Facebook, email and SKYPE is because it can serve as a sobering reminder just how well I have it!

Hearing Loss Can “Suck”

I do hate to admit when a “bad week” is because of the fact that I have a hearing loss. After all, I make a great effort each and every day to live my life as a positive role model, proactive advocate, and enthusiastic recipient of a cochlear implant. But ya know? Sometimes I’m going to have a bad week because of problems I encounter as the result of being deaf.

1. My son’s voice is changing – – AGAIN. Like it could get any deeper? I noticed this last week that it has become more difficult for me to understand my son’s voice again simply because it is so much deeper. I have a mapping appointment at Johns Hopkins Listening Center in May. Do I drag the kiddo with me so that my programs can be tweaked to hear him better? Or, because I’m “so darn independent”, simply tell my audiologist that I’m having difficulty with deeper voices and let her “tweak” based on what the computer tells her to do?

Honestly I inwardly “grimace” when I’m trying to have a conversation with him. I have to actually be face-to-face in order to lip read some as that voice of his just DISAPPEARS in some lower octave that I’m unable to hear. You’d think I’d burn calories as I must intently concentrate and fixate on the conversation.

2. My wonderful husband is having allergy problems like many in the mid-Atlantic states are having this year. It seems pollen is at an all-time high, breaking records across the state. (How exactly does one measure pollen I wonder?) I do know that our cars and porch are always covered in a coat of fine particle yellow dust! For some reason, this year it has really “done a number” on my husband’s voice. Some days (especially in the morning) he actually HAS no voice! It can be very frustrating trying to talk to someone whose voice cuts in and out! Normally, I can be in a different room and carry on a conversation with the man! (Thanks to the Nucleus Freedom!) But this week, I can be looking right at him and some of the words just sort of disappear into space. How can something SO HARD – intently concentrating and trying to understand conversation – be so exhausting? Honestly I’ve been going to bed with a mushy brain.

So yeah… most days I embrace the fact that because of invisible disabilities I live life a little differently, but certainly with an attitude of gratitude. This week? Not so much.

That’s OK, too ya know! We are not always going to be accepting or appreciative of having to do things a little differently. A short list of hearing loss belly-aches?

1. Having to PUT your “ears” on each and every day before being able to hear that first sound of the morning.

2. Having to change batteries to “hear again”… and they never die at an opportune moment!

3. Having to fumble and juggle THREE Size 13 batteries to start with!

4. Not being able to hear myself sing in the shower. As memory serves I am pretty darn good at it!

5. Not being able to run out in the rain and splash and play while HEARING.

But ya know? My list of jaw-dropping, heart-warming, deeply perceptive acknowledgments of what I CAN hear is much longer!

Denise Portis

© 2010 Personal Hearing Loss Journal

Acclimation

Published on by hearingelmo4 Comments

I talked to my mother on the phone yesterday and she and Dad had a big project in which to look forward to for today. They have a beautiful lanai in the back which includes a very nice fish pond and miniature waterfall. In spite of a pump and filters, the pond does need cleaned once in awhile. Evidently, the time had arrived. The Koi have to be erm… “fished out” and placed in big 5-gallon buckets. Then the pond is drained. Next, the rocks and pond are scrubbed and washed with a high-pressure hose. It takes time, and I imagine it’s a messy job. I also imagine one gets a little wet – at least I would.

I called Mom again around 3 PM today. She was pretty bummed. It seems that when putting the fish back into the now clean pond, they didn’t provide enough time for them to acclimate to the temperature change. At the time I talked to her only 4 were still alive, and she lost some of her “big ones”.

Use to the Scum

I suppose my parents could have chosen not to clean their pond. But it evidently gets bad enough you can’t see the bottom. They have a proliferation of live plants and lily pads, but all of these natural AND man-made filters can’t undo the fact that the pond does not have a constant source of fresh water being piped in like mother nature provides. The Koi do not seem to care that the water gets to where they cannot even be seen swimming around. They grow accustomed to all the scum.

Aren’t we that way sometimes? I remember when I first got married, my husband and I did not go to a movie if there was harsh language, sex and nudity, or “adult themes”. We now use a service from “Screen It” . Before going to a movie, we literally screen it. Screen It tells you how many cuss words are in a movie and what they are. It tells you if the movie has any nudity in it, or adult themes. As a matter of fact, it will actually give the entire movie away if you read the whole review – grin! But we have used it a great deal because I just have trouble sitting through movies that are one curse word after another. I don’t care who plays in it or how highly acclaimed it is. But you know something? We make a choice that our movies have to have “less than 10 curse words” in them, and certain curse words are “worse than others” in our thinking. But are they? Aren’t curse words, curse words? And who decides how many is too many? It’s a slippery slope, let me tell you! It takes a lot of dedication and determination to stay true to what we’ve determined we’ll pay money to see for entertainment. I can’t help but feel as if we are agreeing that “a little scum” is OK though.

I heard a young lady recently say that someone they work with let them borrow a book to read. The owner of the book said, “There are no curse words, and it’s clean… you’ll like it!” This young lady was astonished at not only the language in the books, but there were sex scenes. She wondered out loud how that could be? I hypothesized that perhaps the other woman had grown accustomed to the language and written scenes where they didn’t have an impact on her anymore. She didn’t recognize the “scum”.

The SHOCK Killed Them

I’m a bit of a homebody. (I cringe knowing how my family would groan about that). OK, OK… I’m a HOMEBODY. However, my personality is pretty outgoing. I do like talking to people and interacting with them. However, after I lost my hearing and developed a balance disorder, I pretty much began staying at home. Even though I hear voices very well now (in most environments), I still haven’t reverted back to my (literal) outgoing self.

I’m going to a lady’s home this Wednesday for lunch. She leads a Bible study for women in my church. I use to lead Bible studies; in fact, I was one of the main leaders and went from one study to another ten years ago. I use to go shopping and hang out with friends quite a bit too. Now… not so much.

Don’t get me wrong… I’m HAPPY. But I didn’t start out this way. The more silent my world became, the more silent I became as well. I quit everything that required I interact with people. I intentionally isolated myself. It took some time. It was a slow process – I didn’t wake up one morning having become a hermit. So now that I am hearing again with my cochlear implant, and have some of my independence back thanks to Chloe, it has taken some time to make a gradual adjustment to “getting out there” again.

My parents should have kept their Koi in a 5-gallon bucket a while longer. They may have still died… Koi can be very sensitive to change. People can be too – especially people with acquired disabilities I think. Making adjustments in our lives can take time. For one thing… learning to trust can be hard. Learning to believe in yourself again can be even harder.

I have a friend with chronic fatigue syndrome and fibromyalgia. She is a self-isolated individual. It happened very slowly over time. It became harder and harder to explain her disease to other people. She had more “bad days” than “good days”. Constantly having to cancel plans eventually led her to not make any plans. When you look at her she LOOKS FINE. Try explaining that you are NOT. I feel for her. I know what it is like to have an invisible disability. (Still another reason I sport CI “bling” and decided to be partnered with a canine. Nothing says, “something is DIFFERENT” than going everywhere with a working dog!) She is now trying to reach out again, but she is taking it very slowly. After all, it can be “two steps forward and three steps back” many times. I think taking it slowly is a good idea. Acclimation TAKES time, after all.

Do you know someone with an invisible disability? Do you know someone who has a disease that exhibits “silent symptoms”? Perhaps they have isolated themselves and are convinced they are a homebody by CHOICE. They may seem happy. I’m not saying go BUG the heck out of someone who has opted to avoid being in public as much as they can. But I think it is also OK to reach out. Maybe bring lunch to THEM. Working in your garden? Pick some tomatoes or flowers and take them to this person. Email them occasionally. Offer to take them shoe shopping. Who says no to that? (GRIN) Just be aware it may take them some time to re-acclimate themselves to being out more, or having a friend over.

One reason I love the Internet and love to blog? I have “met” an awful lot of people just like me. Some I call “friend” too… for we’ve gotten to know one another and have learned to share our life’s story. We’ve connected. Things like Facebook can do that too, or joining online support groups. I’ve heard some people say, “yeah but those aren’t REAL people”. Excuse me? Behind that keyboard is the mom of a child with hearing loss – and she homeschools too just like I did! Behind another keyboard is a lady who lives with invisible disabilities who is training her own service dog in a big lovable Great Dane. The person who clicks that mouse has MS and has a wonderful service dog who gives her some independence. Numerous “point and click” folks out there have cochlear implants and love to talk about them too! These are real people; our connection is real.

If you know of someone who seems isolated (whether self-imposed or not), encourage them to get a good computer with reliable Internet service. You’d be surprised at the amount of support they can find out there… the connections… the friendships!

Denise Portis

© 2010 Personal Hearing Loss Journal