Looking Back

Are you gonna smile for our Christmas picture?

I love Christmas. Yet my love for Christmas has changed for all the right reasons. With age comes an appreciation for life and the “Reason for the season”. However, immediately following Christmas there is an anticipation for the closure of yet another year.

For me, that might mean psyching myself up to begin writing 2010 on written documents. I always hope I’ll not even hesitate with the right date by at least… erm… June. It’s a time of preparing resolutions, many of which are repeats. That’s sobering in and of itself!

It’s also a time for reflection, however. I like to look back on a year and really dissect it. Some folks thing this extremely odd, or perhaps even unhealthy. Certainly it can be unhealthy if your reflection becomes a yearning and stubborn refusal to move on with life. It can be challenging when that reflection encompasses a year that was really difficult. For me… difficulty is defined by what kind of emotional, mental and spiritual year it was.

Defining “Difficult”

At some point in my life, I may have thought that physical problems characterized a difficult year. However, I’ve experienced brain injury, high risk pregnancies, acquired disabilities and gray hair. Perhaps my own perspective would be different had I experienced living with a terminal illness. Likely, there are those who have extremely different opinions about what constitutes a “tough year” because of such illnesses.

For now, “difficult” includes all of those emotional, mental and spiritual problems that have me sending S.O.S. prayers. Perhaps because I’m a wife and mother, it is much harder for me to deal with difficulties when they happen to people I care about. I suppose there is some truth to the saying that God gives grace to the individual facing the trial. My loved ones “going through it” eventual find the strength to push through and grow. I’m often left feeling and re-living the trauma of their pain long after they have moved on with life.

Having experienced just such a year, one where those I loved experienced the kind of struggles, trials and heartaches that I wouldn’t wish on my worst enemy, I recognize a tiny step of growth.

Own What is Yours

It may be because my children are no longer small and the fact that they are young adults, that I can entrust them to God more easily than I have in the past. Sure… it may be because I’ve finally developed that good habit and it just happens to coincide with their age! I think it more has to do with realizing at some point that even hard years are good for them… just as they were good for me.

When I began losing my hearing after the birth of my son at the age of 25, it was gradual enough that I was able to pretend it wasn’t happening for a good number of years. It wasn’t until I was much closer to 30 that I realized I needed to go see my doctor and then an audiologist regarding my hearing and balance. Over the following decade, I would learn that the emotional toll of hearing loss was much more difficult to work through that actually learning to live with the hearing loss itself. I suppose the most important thing I learned was that my husband, my mother, and my friends were incapable of helping me learn to live with hearing loss. Certainly their support eventually helped me learn to “stand on my own two feet”. Much like a baby pulling itself up on wobbly, inexperienced legs, I had to to take that first step and then another. My “support” network was there to cheer and clap and catch me should they see me falling. But learning to “walk” required that I take that first step. Ultimately, I learned that there was only One who would not let me down. People are… well – they’re people! Human, and fallible in spite of good intentions and commitment! I honestly do not know how I would have ever lived through learning to live in a world gone “silent” if not for my relationship with God. This relationship was not dependent on the ability to communicate using ears.

I believe that every person may grow and thrive if they learn to “own what is their own”. I run into (both physically and virtually) many different people who are going through many different kinds of things. What has been hard for me as a mother is to recognize that my own children must do the same. I can remain supportive and pray for them. I can offer advice (sometimes solicited but usually NOT). I can be there to extend a helping hand when they fall… because they will. Looking back on 2009, I could allow myself to be overcome with sorrow at the pain, suffering and heartache one of my children has experienced. They are still dealing with the effects of these difficulties. And yet… they ARE dealing with it.

Be an Example… the Good Kind

You never know who may be watching. It could be your child, spouse or significant other. The ‘watcher’ may be a co-worker, a family member or a neighbor. It may be that cashier you see every week at the grocery store. It may be someone you share an elevator with every single work day. What exactly do I want people to see? What remains the best influence, the best example? Handling life in a good way, or belly-achin’ about how unfair it all can be?

I lay in the wet yard this past Wednesday staring at the sky. I could feel the cold, melted snow seeping into my clothing and hair. I lay there waiting for the world to stop spinning and closed my eyes to shorten that “wait”. Chloe licked my face once every minute or so, and I opened an eye to look at her. With a wag of her tail she placed a paw on my chest and looked into my face as if to say, “Hey Denise! Why are we laying in the mud? It’s OK that we are, but I just wanted to make sure you haven’t given me a command that I missed. You ended up here in a hurry, and I may have missed something?

I took the five long minutes that it took to eventually sit up and then pull myself into a wobbly stand. Chloe continued to wag her tail and did a “play bow“, enticing me to take a dive into the puddle again if it was really something I wanted to do. By this point, I was crying and feeling awfully sorry for myself. I tucked my cochlear implant into my pocket and made a bee-line for the back door and my “Dry ‘n Store”. The kids both gone to work and my hubby working in his office, I was able to hop into the shower at 6 PM without anyone the wiser. With clean pajamas I knocked on hubby’s office door, pointed to my head and said, “I’m deaf“, just to inform him he was going to have to use Chloe should he need me. I stomped into the QUIET ROOM (so named in order to remind the entire family that no electronics, music, or noise are allowed in this safe and quiet “haven”) and eased myself into a chair to fume.

I’m proud to say that my pity party was at least short-lived. I don’t like falling, but falling is just as much a part of my life as hearing loss is. I deal with it, because it is mine to deal with!

2009 wasn’t easy, but I survived. Can you “look back” and say the same? Is there at least some measurable growth in the way you respond to life and it’s challenges? As I “look back”, there are plenty of times I can say, “Heck! I should have done better!” Even those “times” are growth… for I recognize my mistakes and willingness to do better. The book of Haggai is short, yet contains the word “consider” five times. One can easily substitute the word “reflect” and the meaning is not changed at all.

Let us all consider our ways, and let us reflect. By doing so we can enter 2010 with a determination and resolve that is much stronger than a resolution. My earnest prayer?

Lord? Help me DEAL WITH IT!

Denise Portis

© 2009 Hearing Loss Journal

P.S. “Hearing Elmo” is looking for guest writers for 2010. If you have a connection to hearing loss, Meniere’s disease, or assistance dogs, and would like to write a “guest article”, please email me at denise.portis@gmail.com and type “Hearing Elmo” in the subject line. “Hearing Elmo” is looking for people with different perspectives and even like-minded individuals to encourage others through their own experiences. Happy New Year!

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Breakthrough Hearing Technology

written by guest writer Dr. Terry D. Portis

Crossposted from New Hearing

Part 1, Dec. 18, 2009

The hearing health field is being rapidly transformed by advancing medical technologies.

Earlier this year I was appointed by the FDA as the consumer representative to the ENT Medical Devices Panel. They wanted someone who could read and interpret scientific data, while also maintaining a consumer perspective. Given my personal background as a family member of a person with a cochlear implant, and my professional background with the Hearing Loss Association, they thought I would be a good fit. The FDA lists my speciality as “educational psychology.”

Today the ENT Panel reviewed the Envoy Esteem device. The Esteem is a breakthrough device and gives us a glimpse into the future of hearing technology. It is a totally implanted middle ear device. There are no external parts. I will talk a little more about the technology aspects in the second post.

I had the privilege of spending a few minutes at breakfast this morning with Dr. Leopold, an ENT from Omaha. Dr. Leopold is also chairman of this panel. He worked at Johns Hopkins, and was familiar with the excellent reputation of Anne Arundel Community College. He was surprised that the college has grown to have more than 55,000 students.

The 16 experts on the panel represented various fields, and they either had an  M.D. Or Ph.D. Panel members were surgeons, physicians, audiologists, professors and researchers from all over the country. I quickly came to the conclusion that this group represented some of the best minds in the hearing health field. The FDA certainly outdid themselves in coming up with a high level group of conscientious and caring professionals.

At the end of the day, the ENT Panel voted to recommend approval for the device. The recommendation was unanimous. Here is the link to a breaking press announcement.http://www.medcitynews.com/index.php/2009/12/fda-panel-approves-envoy-impantable-ear-device/

Part 2, Dec. 19, 2009

This post represents my own understanding of the Envoy Esteem device.

The Envoy Esteem is the first totally implantable hearing device, geared towards people with moderate to severe hearing loss. Researchers first began working on the concept 23 years ago. There is no microphone, the device uses the eardrum and the sensor for a more natural hearing experience.

Here is a website with more information: http://www.envoy.us.com/Envoy_device.htm

The surgery is similar to cochlear implant surgery. The device is completely    invisible, and recipients can swim, shower, hike, etc. Some of the components, such as the battery, use pacemaker technology.

If you use the device 24/7, your battery will last about 4.5 years. If you limit use to 8 hours per day, you could see 9 years of battery life. My guess is that most people will keep it running. You also have a wireless remote, to adjust the settings if you like.

Positives: It is invisible, there is no maintenance or cleaning, long battery life.

Negatives: A delicate procedure with similar risks to other middle ear procedures. Specially trained and skilled surgeons are required.

Part 3, Dec. 21, 2009

Part III: Why I think this is important:

1. As a surgically implanted prothetic device it is more likely to be covered by insurance than hearing aids. No matter what healthcare reform bill ultimately passes, will state of the art digital hearing aids ever be widely covered in the United States?
2. The device removes operator error and frustration, and lack of usage. It is implanted, it is activated, you are tested, you are done. Nothing to clean, keep up with, etc.
3. We have another option along the continuum of hearing care. How many people have been frustrated with their hearing aids, feeling they are receiving little benefit, yet do not qualify for a cochlear implant? Envoy Esteem type devices give us something in between. It is also an option for people who say “hearing aids are not working for me.”
4. This is the future. Medical materials and micro-technology are advancing rapidly. Soon, devices such as the Envoy Esteem will be the size of a quarter with batteries lasting 10 years. There will be scores of people walking around with moderate to severe hearing loss, but you will never know who they are. There will be no hearing aid visible, no feedback, no problems in meetings or on the telephone.

Two generations ago, Self Help for Hard of Hearing founder Rocky Stone called hearing loss “an invisible disability.” We are fast approaching the day when it is just “invisible.”

Part 4, Dec. 21, 2009

Part IV: Personal testimonies

In the afternoon of the FDA panel deliberations, several recipients of the Envoy Esteem device gave personal accounts. This was a personal highlight for me. All of them led very active lifestyles, and had not been too fond of their hearing aids.

There were three mothers of small children (in their 20’s and 30’s), a dentist in her 40’s, two gentlemen in their 60’s, and a woman in her 50’s. Nothing about them would have clued you in to their hearing loss. If you were to try to pick them out of the crowded gallery you would have been unable to do so.

The dentist described her frustration of trying to hear over a drill. One young mom talked about now being able to hear her child who frequently gets sick in the middle of the night. One woman talked about being able to use the  telephone at work by just picking it up and answering it like everyone else. One mom talked about realizing her toddler always sings to herself in the backseat.

One of the older gentlemen talked about how he still says “what” after everything his wife says to him. He has developed a habit of doing it for years, but doesn’t need to because he can hear her. This gentleman took early retirement as a corporate CEO because of his hearing issues.

One gentleman, an otologist, talked about how he can go canoeing again and hear what he going on. He said, he wasn’t that great at canoeing, and ended up in the water frequently. This is no longer a problem.

The word that stuck me about each person coming to the microphone was  “self-confidence.” There were lots of people in the gallery, and the people were speaking to a panel full of M.D. and Ph.D. types. Not a problem.

Ingrained Habits

Chloe and Denise at Fidos For Freedom on the training floor…

Being a hearing assistance dog, Chloe has been taught to do automatic retrieves in case I drop something I do not hear. She loves to do directed retrieves as well, but the automatic retrieve is something that is more ingrained for her. It is literally automatic… like 2nd nature, and most definitely an ingrained habit.

This week Chloe and I are testing 3rd graders for CCA with a national standardized test. Want to know something I discovered? Third grade students drop a lot of stuff.

Frequently.

Randomly.

And never notice.

Chloe DOES notice. Even though I am not the one who dropped it, her first impulse is to even break a command like a down/stay and go and get it for me. During the first test, I had to remind her a couple of times to stay put out of harm’s way and let the child get the pencil, paper, or water bottle lid that fell to the floor under the desk.

It was really tough for her. Automatic retrieves are a default setting for her. On the trip home, I thought about my morning and Chloe’s responses. What is MY default setting? What ingrained habits do I have?

Self-evaluation

Geesh. Don’t you hate reflective moods? (GRIN) It was a 45 minute trip home, so I had nothing better to do. Stuck in traffic on the way into town this morning meant I had already listened to two full hours of Christmas music. I couldn’t take anymore of that! So I decided to reflect!

Ya know? I’m not proud of all of my default settings. Some of them are rather negative.

1. As long as I’ve been a “late-deafened” adult, or hard-of-hearing for those of you who prefer that, you’d think I’d be use to people getting frustrated at having to repeat things for me from time to time. If I get a long-suffering sigh, I’m usually ok. No reaction and I realize it really CAN be tough to have to repeat something so often… especially if we are in a noisy environment. If I get an eye-roll or condescending attitude, however, I want to strangle the life out of someone! And well? Murder is still a crime in the U.S. (sigh). So, yeah! I’ve got to work on that default setting. There is an operational procedure that is much more beneficial to me. Patience, understanding, empathy, and even forgiveness may be some things I need to make sure are activated when someone’s response to repeating themselves is not what I’d hope.

2. When I’m tired, I’m a monster and don’t care. Ask my family. A cranky Denise is a mean, critical and onery Denise. I try so hard not to be, and now that I’m in my 40’s I certainly succeed some. But… ideally? I need to make sure I get enough rest. I plan my sleep schedule like it’s something important. Now… I don’t exactly have it entered on my Google calendar, but folks? I make sure I get plenty of rest. I try to make sure I always get at least eight hours of sleep a night. And you know what? As a person with a hearing loss, I have learned that if I can get nine hours of sleep I am really at my best. Hearing takes work. At the end of a really long day of conversations, meetings, and communication… my brain feels like mush. If I’m not getting enough rest, I get to that “mush” place much earlier in the evening.

3. The sky is NOT falling. I’m a bit of a pessimist. Some who know me well might argue that I’m a wee bit more than a “bit” of a pessimist. I work on that a great deal. I consider it a very poor default setting. When something bad happens, I tend to believe that something else bad is going to happen in addition to that first “chunk of sky that clunked me on the head”. I will likely have to work on changing this default setting the rest of my life. It is THAT ingrained. I have to work on being more optimistic.

4. Agree to disagree. I’ve actually changed in this regard to some degree. In the past, I use to think that two people could agree to disagree, but then I’d have to STOP LIKING THEM! (When this is your spouse… that is not altogether a good thing!)  Sure! I’d think, “Ok… we can’t agree here, so we will just agree to disagree!” But then in my mixed up thinking, because they were WRONG (grin), we weren’t “ok” until they came around to my way of thinking! Whew! At least there has been some major growth in this area. I am actually good friends with numerous people whom I do not see “eye to eye” with on every little thing.

What are your ingrained habits? Especially those that may pertain to an acquired disability? Are they positive or negative? More important, are they things that you can change?

Something else I discovered today: Chloe thinks 3rd grade boys have an amazing speech pattern. After all, they don’t actually use WORDS. They use sounds! For example:

“So… I threw the ball and it went WOOOOOSH, right by my head! It clocked me right in the head, BONK! So I started yelling for mom… “AAAARGH” I could hear her coming down the stairs, CLUMP, CLUMP, CLUMP. I could tell she was mad!”  I think Chloe would like it if I talked a little bit more like a 3rd grade boy!

Denise Portis

© 2009 Hearing Loss Journal

Something’s Missing…

My daughter was about 75% finished with this Thomas Kinkade puzzle when she realized she was missing a piece!

This past week, my daughter realized she was missing a piece of a puzzle. In spite of this, she stubbornly completed it. Her original intent was to frame the completed project, but after the missing piece was discovered she dejectedly took it apart and put it up. At least she didn’t let it get her too down… she went out and purchased a bigger, more colorful puzzle the next day!

Ever Feel Like Something is Missing?

We’ve had a tough month here in the Portis household. There have been some pretty major events that have taken its toll on us emotionally and physically. Terry has finally stopped having bad dreams at night, and my doctor is now  “on my case” as it ultimately disrupted my once regulated blood pressure. I was forced to make a medication change, and I see her again in two weeks. Basically this has NOT BEEN FUN.

When our children are little and something hurts them… chances are a “barbie doll band aid” or “spider man patch” was enough to make the “owwie” feel better. If their feelings were hurt, a simple pep talk and instructions to “shake hands and say you are sorry” sufficed. Having young adult children is no easy task. They are independent thinkers and for the most part make daily decisions with only occasional requests for advice from mom and dad. Kyersten will only be living at home full-time for another 8 months as she transfers to a 4-year college next August. Needless to say, I am “treasuring up” these days. Both of our kids work part-time and go to school full-time. They serve in our church and are busy. They are also old enough for life to hit them hard with tragedy and heart ache. As young adults, their “boo-boos” are more serious. It’s very difficult as parents seeing your child face their first “life changing challenge”. It won’t be their last, but it isn’t fun to witness the first and be helpless to intervene.

Perhaps because we’ve been experiencing some very real emotional duress, I have been “waiting for the other shoe to drop“. Have you ever felt that way? It may be that you’ve been through something difficult and even though things are looking up, you sense something bad is still going to happen. Perhaps it’s the result of living for a prolonged period of time under stress. I think we can get in the habit of feeling stress and pressure. Even when life begins to smooth out, we are in the habit of waking up tense. I can’t shake the feeling that something bad is going to happen again.

I wake up that way, and go to bed the same. This has affected even my tinnitus, balance and hearing! Stress and pressure only make acquired disabilities seem worse. Oh sure! This trial has brought me to my knees in a hurry. I believe in prayer and do not have to be coached to go to God when I need advice, comfort, healing, forgiveness or thankfulness. When tragedy strikes, I do have to remind myself… “GO PRAY”, because I’m often just trying to stay in one piece. S.O.S. prayers are harder for me… I guess because I’m already under stress and have little emotion or brain cells for doing something different.

Face toward Heaven... Chloe can set a good example

We just had a beautiful snow here in Maryland. We received 3-4 inches and it was the lovely, huge, fluffy flakes. Chloe and our family dog, Tyco, love the snow. Tyco loves it because he’s an Elkhound… a winter breed. Chloe loves it because it makes everything smell better. Being a hound-mix, she has a better sniffer… than even Tyco. Her muzzle, nose and floppy jowls were all made to collect and intensify scent. She can even smell a scent on the air and may taste and savor it by licking at the air with deep breaths and puffs! When snow is on the ground, smells are intensified, and she LOVES IT. She would spend hours in the yard if I could endure the cold that long.

Today in the yard, the dogs raced around the yard to play. While Tyco went to make his rounds along the perimeter of our fence, Chloe trotted around the yard, nose to the ground, sniffing and tracking all the wildlife scents left from critters in our yard from the early morning hours. She would trace many all the way to the fence and stop when she realized “it had gone over”. She would quickly pick up another scent, and race after it even if it sent her in circles, up and over tree stumps, or scrambling through the wintry bushes. Chloe was getting herself worked up over one scent trail, and I suspect it may have been something “bigger than normal” by the way she was snuffling, whining, and tracking. Eventually, she stopped her frenzied tracking and stopped short with limbs trembling and deep sighs. With the last bit of snow melting away between her footpads, Chloe turned her nose towards Heaven and stood in perfect stillness for almost 5 minutes. The only thing I could see moving was her nostrils and her ribcage. She even closed her eyes and enjoyed the scent of the air… of winter…

It struck me how poignantly clear her example was to me as her human partner. After a disappointing “hunt”, she was still able to enjoy what she was good at… smelling the scents of the winter bouquet caught up in the chilly breeze around us. I realized that although our family has experienced something that will always “show” as a heart scar in our lives, I cannot forget that life is usually VERY GOOD. I had to take a minute and point my own nose towards Heaven to express “thanks” for life and the blessings I have.

Get on Livin’ it!

Don’t allow yourself to look at life’s stresses and tragedy as the “norm”. To easily we embrace what we feel is our “lot” or what we deserve. Bad things happen… and they happen to every person. Matthew 5:45: “For He makes His sun rise on the evil and on the good, and sends rain on the just and on the unjust.” Bad things happen to good people. (Bad things happen to bad people too, but they are usually more of a life consequence than a random occurrence!) Don’t anticipate that bad things are going to happen. Life is good.

ready to come in?

Denise Portis

© 2009 Hearing Loss Journal