If I’ve Said it Once…

If I've said it once

The photo above was taken at the 2006 Walk4Hearing in Pennsylvania. It was completely coincidental that the Walk coordinators invited “Elmo” to interact with the children on site that day. Poor Elmo had no idea what hit him as I squealed and came flying across the parking lot to hug his neck! Children he was expecting. A grown woman – not so much. However, Elmo encapsulated my reemergence to the hearing world – the first toy I heard months following my cochlear implant activation. Elmo’s voice (emanating from the “Tickle-me-Elmo” toy I found on the shelves of a local store) was the first CHILDHOOD voice I recognized after having been tweaked and re-programmed numerous times following my activation. It was an epiphany for me. From that moment on, I knew I was going to be OK. I could hear again – and more importantly RECOGNIZE voices. So to find Elmo that beautiful August day, 7 years ago, was thrilling for me!

I stepped back to introduce myself and explain “why the exuberant hug“. Elmo interrupted me and mumbled something. I said something to the effect of “HUH?” (I’ve always been particularly good with words).

Elmo spoke up. “I CAN’T HEAR A THING INSIDE THIS SUIT“. I stared blankly at Elmo for a moment and then broke into peals of laughter. Elmo put his hands on his hips and looked as exasperated as a character was able while inside a red furry suit! I apologized. Profusely. Welcome to my world!

Welcome to My World

Something numerous readers email me about is their frustration at trying to explain what is working – or not working, to closest friends and family members. I was at an ADI (Assistance Dogs International) conference in Baltimore several years ago and just happened to be in the right place at the right time; relaxing against a wall in the hallway outside a conference room. Because of my position, I was in the perfect place to see and hear a lady take her husband by the elbow and drag him over to the side (near me) to fuss.

She whispered (loud enough for even ME to hear), “If I’ve said it once, I’ve said it a thousand times… I cannot climb over your bag when you put it in the aisle. Do you want me to fall in front of everyone?”

Readers constantly tell me how frustrated they are to have to repeat “how to’s” to those closest to them. Folks they don’t interact with much they expect to remind about what works well for them and what doesn’t work. However, people think that if they are closely acquainted with someone they don’t ever need to be reminded of what they can do to communicate better, or to assist if needed.

A close friend of mine and follower of Hearing Elmo has MS and deals with fatigue frequently as a result. She was out to eat with her mother recently at which point her body just shut down. Although they were not finished eating, she needed to leave and needed to do so right away. She stood up and wobbled, and ended up asking her mother for assistance. Her mother did so but was very quiet on the walk out to the car. It was there her mom let her exasperation get the best of her.

“I don’t understand how you can be out on the field to oversee your son’s soccer team one day, and need help to the car the next. I don’t know how things can turn on a dime like that with you!”

My friend was shocked – and grieved that her mom, someone as close to her as anyone, failed to recognize what to her was obvious. One cannot pick and choose when fatigue and weakness will hit. My friend thought she had explained this to her mom (and very likely HAD). But her mom needed a refresher course in how symptoms of MS manifest themselves to my friend – a unique individual.

When my frustrated friend relayed what happened to me I thought, “Well welcome to my world”. Don’t all of us who live with invisible illness, disability, or chronic conditions deal with the same thing? We have to repeat ourselves – often.

Learning to communicate

It cracks me up to be on the training floor at Fidos For Freedom, Inc. sometimes. Clients and volunteers are asked to “Meet and Greet”. I hate these exercises. I’m not gonna lie. You pair off in groups of 2 or 3 and shake hands, talk, and introduce yourself. This is very “real life”. It is something we do in the “real world”. But I have to tell you there are few things I dread more. For one thing, that wonderful “voice in my head” via the training room floor’s hearing loop system is gone. Instead there is a BUZZ of voices overlapping and rising in volume all around me. I struggle and ask for repeats the entire time – all the while making sure my dog is in a proper down/stay and not flirting with nearby dogs. If more than one of us in the group have hearing loss, we juggle for position trying to put everyone on our “best hearing side”. If you look around the room there are plenty of people with cocked heads leaning close, or others who have definitely invaded the personal space of someone in their group. I’ve been in groups of people who did not have hearing loss who ask, “Now remind me which is your good side?”

My balance disorder allows me to move just fine. Standing still? Not so much. I wobble when standing still. Especially when standing in a large room with low ceilings and ceiling fans. I’m not the only one to be wobbling though. I giggled out loud one day when I lost my balance and a fellow client who uses a walker reached out to steady me and almost lost her own balance. She giggled right back in response and said, “I forgot you can’t hold still!” It was comical actually. Yes, we may both have balance problems, but we could help each other. We learn to laugh at ourselves if needed. We learn to accept help. We learn to communicate what it is we need.

Significant others and Spouses are “Just PEOPLE”

Do you get frustrated with the people in your life who should “know better”? “If I’ve said it once, I’ve said it a thousand times…”!

Even those we love the most are NOT mind readers. They may know how best to communicate with you if you have hearing loss. They may know that certain things like weather or temperature influence how you feel. They may know how certain medications may help – or hinder you. If I’m honest with you, however, I will admit that even *I* do not know how I will feel from one day to the next. Maybe even from one HOUR to the next. It is my responsibility to communicate my needs. It is my responsibility to give gentle reminders. I am responsible to explain 1001 times if needed.

We need to remember that those who love us? They’re just people. They do the best they can – and 9 times out of 10? They are not being a butt-head on purpose. My own spouse doesn’t even blink when I ask him to take my elbow one day, and maneuver my way around a crowded mall without assistance the next. If I’m telling him once AGAIN that I cannot take a call in a crowded store and to please answer my phone? He simply says, “Oh yeah!” (He’s cute that way)

Someone recently belly-ached to me, “At what point do I assume they will never get it? When do I give up?” Who said anything about giving up? There is no “end game” here. It’s a journey.

Let’s all be willing to communicate – again – what we need.

Denise Portis

© 2013 Personal Hearing Loss Journal

I Don’t Like Music

cd player

“Music was my refuge. I could crawl into the space between the notes and curl my back to loneliness.”
― Maya Angelou

If you follow Hearing Elmo you know that I want the emphasis here to be on invisible disabilities or chronic illnesses. Yes, my own challenges include hearing loss and Meniere’s disease but I always try to draw parallels to what unites us as a community of differently abled people!

I normally do not let this much time go between posts. I like to have guest bloggers (interested? email me at denise.portis@gmail.com), and I prefer that new posts are uploaded every Monday. I was dismayed to see that so much time has passed since my last post. It isn’t because I haven’t had the urge or the time. I’ve actually been trying to figure out HOW I wanted to say something without really getting caustic.

Do you have some pet peeves? Come on…’fess up! We all do, don’t we? Because we are individuals, we all have preferences, dislikes, and pet peeves. We have special things that MOVE us. There are things that energize our spirits. Yet, there are things that depress us. And folks? There are things that TICK US OFF. Consider me ticked off.

Not a Great Example?

While prepping for this post, I was relieved when I realized the person I bawled out is not a reader of Hearing Elmo. Small chance they will discover I’m relaying what happened on here – but rest assured they were fully aware of my opinion when the conversation was finished!

“I can’t believe you don’t listen to music. As a cochlear implant advocate, that is not a very good example! ‘It is too much work, is a cop out’ ”

I was stunned.

Cochlear implant companies have been working hard to make sure that those who “hear again” can also enjoy music in addition to hearing voices, being able to use the phone, and most recently to be able to enjoy water sports without having to “remove your ears”.

But I don’t listen to music. I concentrate better in the car when I do not have the radio on to interfere with my attention. On really long commutes, I do listen to talk radio. However, I don’t listen to music. Not even 80’s music which include songs I listened to while in high school! Oh sure, I have all the gadgets, wires, and assistive technology to allow me to listen to music. I just don’t like the way it sounds. Just as I worked hard at hearing voices I couldn’t see (phones), and hearing voices amongst a ton of background noise, I could devote time to listening to music – but I don’t.

Ummm… How is this Relevant?

You are probably wondering where I’m going with this. You’re shaking your head “yes” at your computer screen, aren’t you?

We have to respect the individuality of other people.

I have chosen to make the invisible things about me – visible. It was my choice. I did these things to celebrate who I am and to unashamedly live MY life.

I use a metallic purple cane on my really bad balance days. I chose to mitigate my disabilities with a service dog. I chose a cochlear implant instead of “embracing my deafness”. After a great deal of research, I chose the Nucleus Freedom instead of another brand. I wear bling-bling and would wear blinking lights on my coil if I could figure out how to make a go of that. I am only unilateral and have chosen not to go bilateral. I chose to work hard at communicating effectively. Music was just not important to me.

Is music important to you? As a person with hearing loss did you work hard at being able to once again enjoy music? Are you a musician? Does music fuel your soul? I’m am so happy for you – really I am!

But we are not cookie-cutter versions of each other. What was necessary, important, and “worth it” to you may not be the same things another would choose to work towards.

There ARE a few types of music I listen to one of which is Christmas music during the holidays. However, can I get a shout out for DISNEY TUNES? For some reason, I have really connected to a number of songs from Walt Disney movies. These animated movies were the first I viewed with closed captions as I developed hearing loss when my kids were small. Once I was implanted with a cochlear implant in 2005, one of the first types of music I DID make sure I listened to were some of these Disney songs. One of my favorite was detailed here AND just so happens to go along with this post.

United we Stand, Divided we fall

So as people who have invisible disabilities or chronic illnesses, we should strive to be respectful of individual choices. It is hard enough to work and live among folks who don’t always get it. Surely in our own community of courageous people we can respect individual choice?

Don’t agree with everything someone says or does despite your sharing a diagnosis? Cut ’em some slack.

What are some things that have left you feeling peeved when judged by your peers?

Denise Portis

© 2013 Personal Hearing Loss Journal

Square Plates

Exactly what I want at Target!
Exactly what I want at Target!

Square plates. I WANT THEM.

Why are plates ROUND after all? Squares have such nice neat corners. It isn’t as if round plates hold more! Round plates are not any better at preventing food from escaping if you are an – erm – especially aggressive eater. Or, perhaps TWO-years-old!

I really want square plates. They are different. They accomplish the same purpose. Am I rebel? No, no… you see, my friends?

I’m a SQUARE. That’s right, you heard it first here at Hearing Elmo. (smile)

We May be the Same – But We’re NOT

I have met a lot of people with hearing loss and cochlear implants. We may all have hearing loss, but we are not the same. That is why our hearing aids and cochlear implants are programmed especially for our hearing health profile.

I have met many with Meniere’s disease. I may have the same diagnosis as you do of Meniere’s disease. That does not mean that we share the same triggers. It does not mean that what works to alleviate the severity of symptoms for YOU, will work the same for me.

Unfortunately, even though we may belong to the same community of people – those who live with some sort of invisible or chronic illness, those who are differently-abled, we forget that we are individuals. What works for one will not work as well for another.

There are three cochlear implant manufacturers. I love my cochlear implant. Neither I, nor my audiologist at Johns Hopkins, ever thought I would be hearing this well. My cochlear implant is not “better” than someone who chose another manufacturer, however. Consumers – the patients – have a responsibility to thoroughly investigate all the details about all of the brands available. We pick what we believe will work best for US.

Round plates and square plates do the same thing. They hold food. But some of us like round plates – and some of us are SQUARES.

It always grieves me when I see posts at various online support groups where one member bashes the ideas of another. Or perhaps they are insistent that everyone try their extremely low-salt diet (which happened on a Meniere’s group of which I am a member). It didn’t matter that several of us explained we had tried low sodium a number of times and had found it made little difference.

We need to respect other people’s choice to use round plates – or square ones. In the hearing loss community, our mantra should be “whatever works”. In groups that formed to support those living with Meniere’s disease, we should work on actually BEING supportive. If WE aren’t supportive of each other, how can we ever expect the community at large to be?

Are you a member of a support group for your own illness or disability? Encourage others to be supportive and open to new ideas. Everyone just might learn something! Regardless, we need the non-judgmental atmosphere of a friendly, empathetic community. Respect each other. Before you know it you just might start seeing :

by 10 Strawberry Street
by 10 Strawberry Street

… TRIANGLE dinner plates.

Denise Portis

© 2013 Personal Hearing Loss Journal





We Need Them

With 3 of my 4 “heartstrings”, a group of cochlear implant ladies – some who also have Meniere’s – who connected through our hearing loss.

I am visiting my parents in Florida as I write this. I haven’t seen them in over a year, so with a lot of cajoling, I talked my husband into giving up a week of his vacation time to go see his in-laws. We went to church with them Sunday morning, and I expected a “Christmas Sermon”… not that this is a bad thing. Their pastor, however, mentioned some things that I had never thought about before, and at my age I was surprised about being made to THINK about some new things regarding the Christmas story.

He read from Luke and brought up that Mary, mother of Jesus, went to stay with friend and cousin, Elizabeth. This was right after Gabriel told her, “Guess what? You will become pregnant”. In that time a 14 or 15-year-old betrothed virgin couldn’t very well go tell mom, dad, and fiancé that she was pregnant. Women were stoned for that… not that they would have ever believed her “I’m still a virgin” story anyway. So off she went to see Elizabeth. Gabriel told her that Elizabeth, too, was miraculously pregnant – simply in a different way. Elizabeth was far past child-bearing age. Her pregnancy was also a miracle. Perhaps Gabriel was giving a hint… GO SEE HER. The pastor suggested Mary NEEDED a friend and someone who would understand. God knew this. Gabriel knew this. Mary needed someone who was pregnant that shouldn’t/couldn’t be, and someone visited by an angel. She needed a friend who was going through similar challenges.

Do We Need Friends?

I have friends from my childhood. I have friends at work. I have friends at church. But do you know the friends I depend on the most are those who struggle with invisible illness or disabilities? Like Mary seeking out a friend and confidant who was also miraculously pregnant, I have sought and found friends who are “differently abled”, who face each and every day with challenges others simply do not have.

Abraham Maslow was one of the first psychologists to suggest we need relationships; we need FRIENDS. Cherry (2012) writes of Maslow’s Hierarchy of Needs, “Relationships such as friendships, romantic attachments, and families help fulfill this need for companionship and acceptance, as does involvement in social, community, or religious groups” (para. 6). Many professionals agree, we need friends.

I have friends that are different than me in personality, beliefs, politics, and culture. Despite these differences, they are my friend. When I’m having a really bad “tilt a whirl” kind of day, falling and bruising, and frankly SICK TO DEATH of having to deal with it all, these friends can sympathize. Yet, the friends I seek out to belly-ache, ask for advice, or beg for prayer even, are those who can EMPATHIZE.

“Empathy is the ability to mutually experience the thoughts, emotions, and direct experience of others. It goes beyond sympathy, which is a feeling of care and understanding for the suffering of others. Both words have similar usage but differ in their emotional meaning” (Difference and Comparison, 2012). My closest friends are those who can empathize. They “get it”.

People with invisible illness or disability often fall into a dangerous, self-imposed isolation. Rubinstein (2012) suggests that there is a difference between solitude and isolation. Solitude is healthy, something most of us do not take the time for, missing out on opportunities to meditate and re-charge. However, isolation is different. It is a negative thing… “We don’t feel better by spending time alone, or if we do, it is only that our anxiety about being around people is quelled” (Rubinstein, 2012, para. 2).

When my progressive hearing loss began to cause significant communication issues, I slowly but surely began to isolate myself. It took an “intervention” of sorts to wake me up to what I was doing. We may isolate from friends and family, all the while trying to convince ourselves that by doing so we help others as well.

“When I move to fast and pass out, it only upsets others, which isn’t fair to them.”
“I hate being trouble to anyone. Best I stay home.”
“My disability makes folks uncomfortable. I’m doing everyone a favor by not participating.”

I know some folks with logical reasons and sound argument for why they do not need friends “post-invisible illness or disability”. Have you ever thought, however, that even if you are better off you are robbing another of the gift of your own friendship? There are others dealing with invisible illness. If you do not make yourself available, you may miss opportunities to empathize and connect with others like yourself. Who better to recognize another with invisible or chronic health concerns, than someone who lives the same?

We need friends. Others need the gift of your own friendship. Make yourself available!

Denise Portis

Cherry, Kendra (2012). Hierarchy of Needs: The five levels of Maslow’s Hierarchy of Needs. Retrieved on December 23, 2012, from http://psychology.about.com/od/theoriesofpersonality/a/hierarchyneeds.htm

Difference and Comparison (2012). Empathy and sympathy. Retrieved on December 23, 2012, from http://www.diffen.com/difference/Empathy_vs_Sympathy.

Rubinstein, Noah (2012). Isolation: Issues treated in therapy. Retrieved December 24, 2012 from http://www.goodtherapy.org/therapy-for-isolation.html

Meniere’s Rant

I don’t usually go on and on about Meniere’s disease, but I’ve had a pretty bad week with the “little Rascal”. For one thing, I count myself extremely BLESSED as I seem to have only one major trigger. Rain. I know plenty of other folks who have other types of triggers that include flying, change in altitudes (vacations in the mountains!), alcohol, head cold or allergies, chocolate (oh my!), smoking, and even certain foods! So since I only have “rain” as a Meniere’s trigger, I really try not to complain very much.

A fellow Meniere’s patient pointed me to a terrific support group through Facebook today. I have already found a lot of great information. If you belong to Facebook… check it out here. There is a simple but helpful Meniere’s organization on the Internet which can be accessed here. A website providing basic information and clinical trials can be accessed here. My favorite website is the National Institute on Deafness and other Communication Disorders (NIDCD). They have a terrific Meniere’s Disease section that can be located here.  Thanks to the Meniere’s disease Facebook page, I was even directed to our very own Super Villain – Count Vertigo. Who knew?

Being a former farmer’s kid and because I still have numerous relatives that I love in a farming community in SE Colorado, I try to never belly-ache about the rain. Rain is necessary and in most cases a “shower of blessing” to farmers, ranchers, and those who get tired of moving their sprinklers around.

But this week? SIGH. I’ve had some bad experiences. On a rainy day, I fell in the laundry room this past week and happened to find the only exposed nail in the “unfinished room”. Thankfully, I hit it square and impaled myself through the fleshy part of my arm. I was able to pull it clean away and stop the bleeding very quickly. A quick verification that I had a tetanus shot recently, a severe pounding with the hammer on that (stupid) nail, and I escaped “nearly” unscathed.

This morning my alarm clock went off and my well-trained assistance dog was in my face immediately to “kiss me awake”. As soon as I sat up I knew it was raining outside. When the room spins the moment I become vertical, I rarely need to look outside to verify that it is raining. I didn’t fall until about 10 AM. Unfortunately, when I lost my balance I was on the stairs with my arms around a large load of laundry. Missing three steps means I have a pretty good chance of landing “gracefully” and still on my feet. Missing four however? Not a chance. I lay sprawled on the floor staring at the ceiling and a concerned hound dog with dirty laundry scattered all around me. I have a standard set of “OK, I’ve fallen – now what?” questions I ask myself.

1) Am I conscious? (duh)

2) Is anything broken?

3) Am I laying on anything important (like a dog or a cat)

4) Can I close my eyes and open them again and stay conscious?

5) Do I need to call a family member?

If I can answer No, No, No, YES, and NO… then I simply sit up and take my time to re-group. This time I didn’t hit anything other than my elbow on the way down. I may or may not be sporting a pretty blue spot tonight.

There is no cure for Meniere’s Disease. (Hope you aren’t new to the disease and I just depressed you for the remainder of the year!) There are some treatment options, but they only work for “some”, and all the options only serve to reduce the severity of symptoms or number of attacks. NIDCD lists several treatment options that include:

1. Medications – Prescriptions such as meclizine, diazepam, glycopyrrolate, and lorazepam can help relieve dizziness and shorten the attack.

2. Salt restriction and diuretics – I take a prescription diuretic and do restrict my salt. I’ve not seen any real difference, but continue to do these in case it has a cumulative effect.

3. Cognitive therapy – Doesn’t treat the Meniere’s but does help the patient deal with anxiety and coping with “future attacks”.

4. Injections

5. Pressure pulse treatment

6. Surgery

7. Alternative medicine. I take Manganese (5 mg) and a B complex vitamin. Researchers have found that Meniere’s disease patients have a Manganese deficiency. Manganese can be hard to find. (Magnesium is plentiful, but you’ll have to go to a specialty store or order online to find Manganese). Other treatments include acupuncture, acupressure, tai chi, and other supplements. Always tell your doctor if you are taking other supplements as many may interfere with prescription drugs.

This past year, Gene Pugnetti was surgically implanted with a special cochlear implant to treat his severe Meniere’s disease. You can read about the latest update here. The original story can be read here. I will be looking for updates about Gene and wish him the best!

Some things I have learned that help me with Meniere’s disease:

1. I take 5 mg of Manganese and a B-complex vitamin.

2. I limit my salt and take a prescription diuretic.

3. I take 50 mg. of Benedryl before bed.

4. I have inexpensive molding about 4 feet high along the hallway, kitchen, and bedroom. At night, if I have to get up in the dark, I only need to feel my way around the room to discourage getting disoriented. Without it, my eyes “play tricks on my brain” about how close the floor, walls, and doors are as I am struggling to see in the dark. The molding has allowed me to move about the house as needed in the dark without injury.

5. I never EVER go down the stairs without holding on to something. If I have something in my arms, I balance the “something” on one hip. On bad days, if it takes me 3 or 4 minutes to get down the stairs instead of 30 seconds, that’s OK. Patience is a virtue… and may prevent broken bones!

6. I avoid looking directly at ceiling fans or other contraptions that “spin”.

7. I do not ever ride roller coasters, or rides that spin in any way. If I am “spun” into an unconscious state, it is rather difficult to hold on! I made a promise to my family after “Space Mountain” in 2002 to avoid these rides for the remainder of my life. I’m finding it isn’t a difficult promise to keep.

8. I stand and sit with pre-meditation. To simply “pop up” or sit down quickly only means I will experience dizziness. Why bother when moving with a little more care will help to avoid it?

Hopefully this information may be of use to someone! I’m very thankful Meniere’s disease rarely necessitates I write about it!

Denise Portis

© 2010 Personal Hearing Loss Journal

Not Taken For Granted

October 2000 - September 20, 2010

It’s the little things that make a difference when you are “hearing again”.

This morning we had to put my daughter’s cat, Mandie to sleep. Kyersten is a junior at Liberty University in Lynchburg, VA. She doesn’t have a car and yet through friends was able to get home. (We currently only have one car and couldn’t do it).

It was a series of phone calls – some in a panic, to get all the plans just right so that she could get home in time. The cat could not wait. I’m just amazed at what a difference being able to hear on the phone means even in the midst of a small family crisis.

Not only could I hear to communicate plans, etc., but when we went to the vet I could hear whispered voices as the technicians tried to remain sensitive to the reason we were there. WHISPERED VOICES.

I am so thankful for cochlear implant technology and for being able to “hear again”. I’m certain that if I had not been able to have CI surgery, we would have still found a way through family crisis without my hearing. However… it just makes the biggest difference. You just really can’t imagine what it means unless you’ve lost your hearing and regained it through cochlear implants.

I do not take it for granted.

Denise Portis

© 2010 Personal Hearing Loss Journal

Let Go – Let God

Kyersten standing in front of her new dorm at Liberty University.

This past weekend my husband, firstborn and I headed to “Summer Orientation” at the college my daughter is transferring to this fall. She will be transferring in as a junior and we came to complete the remainder of her check-in requirements and participate in some on-campus meetings.

I’ve been deliberately and methodically choosing not to think about this fall and the impending separation from my firstborn. I’ve always been pretty good at that and it keeps me from perseverating about unpleasant events. However, attending meetings about “how to let go” and how to encourage independence, forces the issue to the front of my mind.

Because of the forced concentration on this coming fall, I came to a startling discovery. I’m actually going to be OK! Kyersten is confident and excited. She received fantastic scholarships and is lined up for Work Study. One of Kyersten’s roommates is a young lady who graduated high school with her. Elise will be transferring in as a junior as well. I have easy access to email, SKYPE, Facebook, cell phone, and texting. I may shed a few tears after dropping her off this fall, but truthfully I am more excited than devastated about our family beginning a new chapter. We’ve prepared for this and we are ready. I have faith that God will keep her in the palm of His hand. I can let go – and let God.

Kyersten overlooking her "new city", Lynchburg, VA

I’m not as good at that about all things, however. Some things I find it more difficult to…  “let God”?

1. Finances: My husband works full-time and also works part-time as an adjunct professor. I work “very” part-time as a teacher at a private school. I currently only work one day a week, and only during the school year. I will not be finished with my Master’s degree until the end of this year, and even then I will probably have to wait until the following school year to work a truly “part-time” schedule. This means that things are tight financially. Really tight! I try not to complain or worry because I know so many who are unemployed or struggling with more difficult financial issues than we are. Our car needs fixed. We have debt. It’s really hard for me to release some of these worries to God. I want to “fix” things… stay in control. I believe God equips us to make decisions to work through financial problems, but at some point you have to have faith too! I struggle with having that faith…

2. Hearing: I am truly blessed to have bionic hearing and experience daily the miracle of “hearing again”. Each morning when I slip my coil magnet into place, I am reminded of the miracle of hearing again. A confession? I always fear “how long will this last”. Perhaps it’s because I experienced profound deafness for a couple of years prior to implantation. I know what it means to not be able to hear and communicate well. It had such a devastating effect, it left invisible scars on my heart and mind. I am implanted with the “most reliable” cochlear implant on the market. Yet because of FEAR, I always get a hitch in my breath right before I connect the magnet each morning. I have trouble letting go of this fear… and letting God give me the confidence that He is in control.

Do you have trouble letting go – and letting God? I believe it is because there is a small part of us that wants to control our own destiny. In some ways, if we are the only ones in charge of our destiny then we are the only one responsible for the outcome. But is that true?

Reality check: Decisions OTHER PEOPLE make often impact our lives and our future. Natural disasters can have an influence. A devastating health diagnosis can impact our future – our very life. Stock markets crash, wars continue, the housing market may plummet. Someone we love may be killed by a drunk driver. People may be robbed, raped or murdered. Nothing like painting a rosy picture for you, huh? GRIN.

The good news? God is in control. John Ortberg said, “Peace doesn’t come from finding a lake with no storms. It comes from having Jesus in the boat”. I don’t think we can truly “let go – and let God”, if we aren’t in the habit of daily interacting with the God who loves us. You cannot think about God part-time and expect His peace full-time.

I love studying and using the names of God in my daily interactions with Him.

Jehovah-Rophe or Jehovah-Rapha: The Lord God heals

Jehovah-Sabaoth: The Commander to the Angelic Host and the Armies of God

Jehovah-Jireh: The Lord will provide

El Shaddai: God all sufficient

Jehovah-Shalom: The Lord our Peace

The names of God remind us of all the things He IS. These reminders make it possible for us to “let go – and let God” with confidence.

I encourage you to make a list of things you have trouble letting go of and discussing them with the One who really cares. I still have two big issues that I have trouble letting go of… yet learning to release these worries daily create a confidence that I can feel is growing. My hope is that I will one day realize I have truly “let go”.

Denise Portis

© 2010 Personal Hearing Loss Journal

Memorial Day

I am grateful for the men and women who have given their lives in the service of our great country. Memorial Day is often misunderstood and some folks think the day is to honor all the men and women who serve in our armed forces. Memorial Day is specifically set aside to honor the “fallen”, and those who have literally given everything in service to the United States.

However, I am closely connected to those who have a hearing loss since I “hear again” with the technology of a cochlear implant. I’m also keenly aware and thankful for the men and women who serve our country and as a result … lose their hearing.

A man I have come to respect for his fair and straight-forward approach to dissimulating stories and news about hearing loss is Larry Sivertson of Hearing Loss Web. He has an excellent list of recent stories about hearing loss and our military. If you have time, please check out the stories from his website. Many men and women come home after serving our country in active military zones with a hearing loss. Thankfully, many are able to be implanted with a cochlear implant.

I thank God for those who have given their lives in service to our country. I am grateful for those who have served and as a result lost their hearing or suffered some other acquired disability. There are sacrifices made that we can never understand or fully appreciate. Many come home with invisible disabilities like hearing loss, but others come home internally wounded by what they have seen, heard, and experienced. Today I pray for all the men and women who serve our country and gratefully pray for them.

Denise Portis

© 2010 Personal Hearing Loss Journal

Divine Deposits

~ 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

It’s a Shame You Don’t Burn Calories

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