Fallow Ground

I have really enjoyed FaceBook and reconnecting with old friends and family. However, FaceBook gets a lot of “flack”. My husband wrote a terrific, short post on his blog about this very topic and you can view it by clicking here. FaceBook has become much more than a way to “re-connect”. Because it is so simple to use, I use it connect to people I care about every single day. One can quickly see what people in your life are up to and honestly? It makes it easy to write a quick word of encouragement.

It also has some games. I’m not a big game person, but FarmVille is a popular one. I’ve become a little complacent about my own “farm”, but it is still fun to check in each day. I allow much of my farmland to be “fallow”. My busier, more industrious farming neighbors will “drop by” from time to time to take care of my fallow ground and plow it for me. If I’m really lazy and don’t plant anything, they will also fertilize the newly tilled ground.

I get tickled at the fact I don’t have to do a whole lot of work to my farm some weeks. At times, I wish that fallow ground would stay that way because it saves work for me later. (Like I said, I’ve become a lazy farmer). I grew up on the farm. Fallow ground is an important part of farming. Sections of farmland are intentionally left unplowed and unseeded during a regular growing season. Even though it is undeveloped, it is potentially useful to the farmer because it allows the ground to “recover”. The stubble left over from the previous harvest will break down and leave valuable nutrients in the ground. Because of my own sections of fallow ground on FarmVille, I have been thinking quite a bit about the concept of fallow ground.

Fallow Ground Symbolism

The Bible mentions fallow ground in Hosea 10:12 and Jeremiah 4:3. In both places it talks about breaking up the fallow ground as a word picture of cultivating your heart and life so that you can serve and minister to others. It lends the idea that a heart or life can be “hard” and unusable.

For a farmer, however, fallow ground IS useful. I am a big supporter of taking time off and having a designated time of reflection. Perhaps it is because I recognize that we are all way to BUSY. I have been emailing a lady in her 30’s who is a referral from Johns Hopkins Listening Center (their cochlear implant clinic). I’ve agreed to be a mentor and contact for people who are considering cochlear implants. (I’ve asked her permission to share this). It is difficult to be blind-sided by an acquired disability. Sometimes, the change can be sudden, extreme and permanent. Sudden sensorineural hearing loss (SSHL) had robbed this lady of her ability to hear well. She is feeling overwhelmed and at the breaking point. Her life has been in over-drive for some time, and SSHL made her feel like someone had “jerked the carpet out from under her and she lay dazed staring at the ceiling” (her words).

I said, “What you need is to allow some fallow time in your life. You are so busy and yet trying to cope with a major life-altering change. You are giving so much of yourself to so many others, you aren’t even able to weigh the pros and cons and investigate CI’s. I recommend taking time off. Allow your life to go fallow for a designated time. You need this time to re-group, think, and rest”.

She is now doing “just that”. She isn’t WASTING time. She is deliberately taking some time for herself so that she can work through her thoughts, feelings, and investigate cochlear implants.

“Fallow” is not Wasted

I think more people should determine to take time to reflect. I try to meditate and pray at least once a day. There are occasions where I take longer periods of time. But let’s face it… most of us are too busy to really have the time for reflection. What can we do about this?

This is an unpopular idea, but I firmly believe everyone should step back from “all their extra-curricular activities” from time to time. I believe elected (and volunteer) community service, non-profit, and support group positions should have specific limits on terms of service. It forces a change in leadership and allows over-worked, committed volunteers to rest (provided they don’t launch themselves into some new role).

Before insecticides and chemical fertilizers, more farmer’s left ground fallow to aid in replenishing the minerals that occur naturally from “resting the ground”. Today, leaving ground fallow may cut potential yield and profit. I believe that too many of us believe the same in our lives. If we do not keep volunteering for everything, who will do the work?

I had a real test of this in 2010. I have been told by folks I respect that, “If you step down from a leadership role, the vacancy allows God to fill it with someone He has already prepared for that position”. In 2010 I would be beginning the last year of school, and just simply could not lead my local chapter of the Hearing Loss Association of America. Numerous personal reasons and simply feeling BURNED OUT had me dreading yet another year of having to step up in a leadership role. The young mother who had taken the “reins” for 2009 had done an excellent job. I made the mistake of simply “moving” my available volunteer hours to another position of leadership within the chapter. As 2009 came to a close, this busy young mother wisely chose not to run another term. I was getting some pressure to step back up to “the plate”. Because I knew what this last year would entail for me I had to really think about it. Because I was already weary, burned out, and overwhelmed, I decided to put a “year sabbatical” to a vote for the chapter members. Incredulous that I was not going to step up and fill the vacant role, they unanimously but grudgingly agreed to a “year off”. I could tell that many were worried! We have elections in October and November each year. I actually had high hopes that God would press on someone ELSE’S heart the desire to step forward so that our chapter would not really have to close for a whole year.

I waited.

No volunteers stepped forward.

I “stuck to my guns” and we entered 2010 only meeting virtually. You know what? We didn’t “fold”, nor close our doors. As a matter of fact, numerous people once in leadership roles really needed this year off for various reasons. Elections are already underway for 2011, and we have a wonderful lady who is now able to devote her time and resources to leading our chapter in 2011. She wasn’t available last year. She needed this year off too!

I felt a little bit of pressure from well-meaning “others” to step back into the role of newsletter editor for 2011. I chose not to do so, simply because I know what my 2011 is gonna “look like” (to some degree… like many of you it is the part I DON’T know that causes significant stress – grin!). I need a “fallow” year. I’ll be finishing up school soon and will be starting to put an effort into finding that career… that position that helps shape a “better me”. Really this last year my free time was taken up with doing school! Next year? I need my life to become “fallow” in terms of allowing a rest and reprieve from even worthwhile activities and groups of which I am passionate about. I’ll still be an HLAA active member and participant, but my free time I need to be “me time”. I feel undernourished. I refuse to feel guilty.

How about you? Do you feel guilty when you aren’t OVER-involved in important, mission-minded organizations? Do you feel like you have to say “yes” to everything? Do you yearn for a bit of quiet and time to rest your soul, mind, and body?

I came across a poem written by a lady I know from FaceBook. (Like I explained earlier FaceBook is far more than reconnecting with high school classmates). She wrote a beautiful poem that I really felt “fit” the idea of needed and necessary “fallow” time in life. She agreed to let me share it here at Hearing Elmo.

Ocean’s Healing Grace
by Nancy Wilder

a lone figure sits easily on the sand
bare feet playing tag with icy foam;
so small in this vast ocean panorama
she gazes out over the horizon hues.

heart heavy and a mind in turmoil
sand and surf her refuge of choice;
breathing in the strength of nature
an open invitation for healing balm.

dawn has come and turned to morn
gray sky meets water in chilly repose;
pretty escape is not what she requires
peace provides nourishment to heart.

slowly the small figure begins to ease
battered mind gently clears in relief;
absently tiny fingers draw in the sand
as gulls dive for their morning repast.

the ocean’s healing grace envelops
urging an embattled soul to find joy;
life’s small blessings are apt minion
to supply happiness on daily course.

acceptance calls a smile to gentle lips
as she stands, the sun kisses the sky;
twirling gaily she casts away sadness
her heart and mind embrace a new day.

If you are feeling overwhelmed and near burn-out, I challenge you to allow yourself to become “fallow”. Don’t falsely bully yourself into believing this time is wasted. Go find an ocean…

Denise Portis

© 2010 Personal Hearing Loss Journal

Community

I don't exactly blend into the background...

Recently Chloe and I were at our neighborhood grocery store. I rounded a corner and came face-to-face with a young boy approximately 6-years-old. His eyes grew wide as saucers and his mouth dropped open. Curious, I looked around quickly to make sure his astonishment was at my own appearance and not on someone in my vicinity. Since it was just Chloe and I… I surmised he was surprised at ME. He looked at Chloe carefully and read her vest. I could see his little mouth sounding out the words on her vest. I could “see the light bulb go on” for him about what Chloe does as her job. He took a step to the side and leaned so as to better see the side of my head. My smile let him know I was OK with that – I even turned my head so he could better see the cochlear implant. His answering smile seemed thrilled to understand as the result of his attentive perusal. I wasn’t prepared for what happened next. So unprepared was I, my own mouth dropped open in surprise!

A lady who looked like she’d lost a 7-year-old boy came around the corner in a near trot. She stopped dead in her tracks and looked with relief on the boy and waved at him to “get over here“. He shook his head “no” and signed, “Look (towards me)! Cochlear Implant receive me, able dog own can/able? yes?” His mother practically interrupted his sign and shook her head NO.

She signed back, “Dog want – cochlear implant want not. Appear normal important!” She took him by the hand and drug him away to the cereal isle. I stood there for a few minutes digesting what I had over – erm – HEARD. Obviously, she didn’t realize I am fluent in ASL. I stood there … in all my NOT NORMAL glory… not fitting in… while Chloe sat and stared at a box of Uncle Ben’s rice that happened to be nose-level.

I was speechless! For those of you who know me – well that is a RARE THING – THAT! I finished my shopping in a near-daze.

Not Normal

I wear “bling” on my cochlear implant and have a bright, red ear mold on the hearing aid in the opposite ear. I have an assistance dog who alerts me to direction, sounds I miss, and helps me with balance related tasks. You can look at me and guess pretty quickly there isn’t a lot NORMAL about me. But that isn’t because I have a hearing loss and balance problems. Plenty of people wear cochlear implants or hearing aids. Plenty of people have balance problems. I believe my not being “normal looking” lies in the fact that I make sure my invisible disabilities – AREN’T. There are numerous reasons for that… likely best left for another post. It is in my best interest to be visible. It keeps me from getting injured – although it doesn’t guarantee that.

Not everyone with hearing loss chooses to be as visible with bionics or assistive listening devices and technology. Not everyone with Meniere’s disease is partnered with an assistance dog. Yet this works FOR ME. I’m happy, confident and independent. Isn’t that what every adult wants, after all? Sure – like everyone I have things I am dependent upon. My faith – the love of my family – connections with others. However, what I choose to use in order to live my life independent of the help of others is my desire. I’ve taken steps that I felt were necessary to ensure that independence.

A “Brag” on the Hearing Loss Crowd

Can I just brag for a minute? Do you know that I believe people with hearing loss tend to be more accepting and understanding about differences than any other group? I am MOST at home in a crowd of people who all have hearing loss yet are extremely different.

Some have assistance dogs

some “sport” various CI’s represented by all three manufacturers of cochlear implants

some have vision loss as well

some have hearing aids

some wear neck loops and are using assistive devices

some use sign language

some carry notebooks and READ and WRITE messages…

Yet I am at home among this group. I was reminded of how at home I feel after enjoying the numerous pictures taken by friends who were able to attend the recent Hearing Loss Association of America convention in Milwaukee. Everyone “fits in” at these conventions. It’s much like a family reunion. I don’t agree with everything HLAA does, nor do I believe they always seek to fulfill their original mission. But one thing HLAA does very well is – COMMUNITY. Through forums, live chats, national conventions, state conferences, local support groups, and the Walk4Hearing, HLAA provides community to an every-growing population of people living with hearing loss. Being a part of this community encourages people to do more than live with hearing loss. This community encourages LIVING WELL with hearing loss. I think we all want an abundant life!

William Mather Lewis: The abundant life does not come to those who have had a lot of obstacles removed from their path by others. It develops from within and is rooted in strong mental and moral fiber.

Socrates: Living well and beautifully and justly are all one thing.

Latin proverb: While life lasts let us enjoy it.

Denise Portis

© 2010 Personal Hearing Loss Journal



“Play Your Own Hand”

My Mother at Harper's Ferry, WV, in June of 2010.

My parents came to visit last week as they wanted to attend my son’s graduation. They live in Florida, so it was great they could stay awhile after Chris’s ceremony as we don’t get to see them that often. Mom and Dad live in a gated community in Florida. They play cards there… a LOT of cards. When they come, they often teach us a new game. That may seem pretty “ho-hum” to most of you, but I grew up in a household that played ROOK and Gin-Rummy. That Mom and Dad come and teach us brand new games with elaborate sounding names like Shang-hai Rummy, we are pretty thrilled. It gives us a chance to sit around the table and visit while playing cards each night.

They brought a new game with them this time called “Bohemian Poker”. It was really fun, and the hands are relatively short so that those of us with short-attention spans can concentrate. Without going into the details of how the game is played, mom reminded us all through the game (usually after a mistake was made) to “play your own hand”. Eventually I was able to do just that, but it did take quite a bit of repetitious reminding on her part.

The opposite of “playing your own hand”, would be to look ahead at the person or persons after you and intentionally play in such a way that they do not benefit from your play. Some players go so far as to collect more points in their OWN hand to keep others from benefiting from their play. (The object of Bohemian Poker is to have the FEWEST points). Mom reminded the novice players at the table to concentrate on what would benefit them the most… to not look at other’s hands, and concentrate on your own. I suppose another way of putting it would be to “mind your own business”!

So freshly ingrained is this new phrase, I have been thinking about how that applies to so much in our life. With her permission (and blessing) I decided to blog my thoughts on the idea!

What It Is NOT

“Play Your Own Hand” does not mean that you intentionally live an isolated, segregated life. It does not mean that you ignore the needs and problems of others and concentrate on taking care of your “own” exclusively. It does not mean that when we see an opportunity to serve or minister in our community or circle of friends, that we do not reach out to those we see in need.

“Play Your Own Hand” does not mean that you do not make short-term and long-term goals, for in truth, both are wise practices in the life of any adult. Sometimes those goals include relationships with others, and so we must determine how our goals affect those who are in our circle of influence.

What It DOES Mean

I believe that “Play Your Own Hand” teaches the following lessons:

1. Pay attention to what God has given you to do. Don’t worry about what others are doing as it is not your responsibility. Your choices, decisions, and planning ultimately affect YOUR life.

2. Don’t live defensively, countering wise decision for your life in order to keep someone else from benefiting.

3. There are gambles in life. They can be both exciting and nerve-wracking. May the chances you take only influence you, unless some benefit or blessing is passed on to another.

4. If someone you care about is ruining their life, try to be a good influence… pray for them… encourage them. But don’t allow their problems to become your problems. They may have some hard lessons that need to be learned through reaping the consequences of their own decisions.

Hearing Loss – So Much Variety!

I have met a great number of people with hearing loss through the years. Through speaking engagements, conventions, online support groups, HLAA and other hearing loss venues, I have discovered that hearing loss is not “one size fits all”. I have Meniere’s disease as well, and am amazed at the variety of symptoms and triggers individuals who struggle with this disease exhibit.

I have also seen people with hearing loss criticize decisions others have made to best cope with their hearing loss. Those who are pro-ASL, often butt heads with those who are anti-ASL. In my opinion, it makes both crowds… BUTT HEADS. Some people choose to use technology, or to be surgically implanted with a cochlear implant. There are three cochlear implant manufacturers. I have seen “CI Wars” both in forums on the Internet, and also face-to-face. Cochlear Americas, Advanced Bionics, and Med-El seem to have enthusiastic and loyal recipients. Is it not best to celebrate “hearing again”? Why does it matter what implant an individual chooses in order to best hear again? Sure – some companies have different perks, low “fail” rates, etc., but being negative or belligerent to an individual sporting a different brand is stupid and immature. (Not really pulling any punches am I, grin!)

“Play Your Own Hand” and do whatever it takes for YOU to hear best. To do so, insures you may communicate as best you can and to practice independence towards hearing all you can with the ears you have. Celebrate when others are learning to be proactive about their own hearing loss. Always be willing to try something new… you may learn a thing or two about your hearing loss even decades after you began living with these communication issues.

Denise Portis

© 2010 Personal Hearing Loss Journal

My Own Backyard

Tin Woodsman, “What have you learned, Dorothy?”

Dorothy, “Well, I – I think that it… it wasn’t enough to just want to SEE Uncle Henry and Auntie Em – and it’s that – if I ever go looking for my heart’s desire again, I won’t look any further than my own back yard. Because… if it isn’t there, I never really lost it to begin with! Is that right?”

In 1990, I took a leave of absence from Vandalia Christian School in order to raise my “miracle babies”. I was told I would never have children, so when I had Kyersten in February of 1990, and her brother Chris 11 months later in 1991, I decided to be a stay-at-home mom until they were old enough to go to school. My plan was to return to teaching. I loved teaching, and loved my “big backyard” in the investment I made in the lives and hearts of teenagers. I couldn’t wait to get back to teaching, even though I enjoyed every minute of staying at home with my children. I looked forward to speaking on behalf of BIANC (the Brain Injury Association of North Carolina), and enjoyed serving at camps and attending support groups in the area. My dream included reaching out to others, teaching, speaking, and making a difference in a very big backyard. That was my heart’s desire. I had big dreams.

However, after the birth of my son I began to lose my hearing. I experienced a slow and steady decline for the next ten years until I had a profound loss, and was really deaf! I began to experience problems with vertigo and my balance and was diagnosed with Meniere’s Disease. I saw “my own backyard” become smaller and smaller. I woke up one day and realized my community… and those I had influence over were my own young elementary-aged children. Through a series of traumatic public school experiences, I ended up doing what I never thought I could do… homeschooling my children. I vowed to do it “only one more year” until we could afford to put them in a private school. One year led to still another year, and the kids were thriving in numerous activities, cooperative programs, and were testing well above the national norms. During this time, we moved to the DC area and I did begin teaching part-time at Chieftain Institute. Unbelievably, I homeschooled the kids all the way through high school. (Chris is a senior this year but attending community college a year early). Both made the Dean’s list and/or Honor Roll and are leaders in their Bible study group on campus.

I am proud of the kids… yet… sometimes I am left looking at my tiny backyard and am reminded of all those dreams I had as a young adult. Now that I am “hearing again” with the Nucleus Freedom, I am back in school pursuing my Master’s and still teaching part-time. But… my life is so different than what I imagined at 25-years-old. Chloe helps to make me independent of even my family. It’s not that I resented being dependent on them, but I needed them to know I would be OK… especially the kids. I DO WANT THEM TO LEAVE HOME! I wanted them to know I would be OK without their assistance. Chloe has given me that independence. However, when I look in my “small backyard” it hardly resembles the backyard I imagined. Although I work very hard to not allow it to do so, my disability isolates me in many ways. I can’t drive safely at night, I can’t use the telephone without a great deal of effort, and on rainy days like today? I walk with serious and meticulous care to insure I don’t “fall down and go boom”. In spite of all of this, I frequently ask myself, “When I look in ‘my backyard’, is my heart’s desire there?

Desires of the Heart do not CHANGE

In January of 2008, I sat down and had a real “think session” about my goals, dreams and heart’s desire. My husband was just asked to resign as Executive Director of HLAA so that they could hire someone fresh and young with new ideas and energy. He found a job right away in higher education (which is where I always knew God would have him end up as he is so gifted in administration and teaching). It was a time of new beginnings for the whole family. I may be a “hearing again” woman, with much about my life changed as the result of an acquired disability… but my dreams do not have to be shelved and only looked at with regret and sadness.

The magic… the blessing even, is not in the size of our backyard. That inner peace and satisfaction comes from being active in living within the focus of our heart’s desire. I am teaching. I am still making a difference, although it is in many small ways. I am active in a local chapter of HLAA, I faithfully pray for a great number of people each and every day, I reach out as I’m able, using whatever skills and gifts that I have.

Many people stress about what God’s will is for their lives. They sit around worrying that they will miss this magic window of opportunity for God’s best. They may desperately try to mold their heart’s desire to be a Polaroid of  God’s will for their life. Truthfully? Our heart’s desire stems from natural gifts and skills that we were born with and our spiritual gifts are often those traits that occur naturally as part of our personality. There is no “magic” involved in finding God’s will for your life. There is no ‘hocus pocus’ in discovering your heart’s desire.

I was sipping my green tea this morning, looking out on the small lake that is my backyard. Everything I want is here. I try to make a difference in the life of one person each day. That’s my goal. That one person may even be a family member. Why do we neglect them? Why are they not important enough to invest ourselves in each day? If your immediate realm of influence only includes a spouse, sibling, or children, take the time to INVEST yourself. Are those whom you are able to influence and reach out to co-workers? Members of your church? A lonely neighbor? We so often look over the heads of those most important in order to try to lock eyes and invest ourselves in someone “worthy” or in a way that others will notice. Drop your gaze and lock eyes with those closest to you. There are hurting people everywhere… people in whom a small investment of time goes a very long way.

Certainly God gives some of us a wider scope of influence. That’s terrific, but tend to your own backyard. There are people, some perhaps very close to you, who could use your attention. My own soggy backyard is small and consists of family members, contacts from HLAA and Fidos For Freedom, small classes at Chieftain Institute, and peers in my grad classes. My heart’s desire is here. My goal is to make a difference to ONE each day.

Your life is no less influential. Who lives with you? Who lives next door? Who do you work with and attend church with each week? Do you see the same cashiers at your favorite grocery store each week? Tend to your backyard. It may be a shared courtyard, or private small “space”. It may have been neglected. You may need to mow, and pick up bundles of branches left behind after a life’s storm. Your heart’s desire is there, and each is lovely and unique. Our lives and homes are our own opportunity for significance.

Click your ruby-red heels together and repeat after me, “There’s no place like home”.

Denise Portis

© 2010 Personal Hearing Loss Journal

It Takes Just One Voice

DSC031201

My “morning chore” this morning included cleaning up the porch and putting patio furniture up for the season. Each Autumn I accomplish this task, I’m reminded how desperately our deck needs replaced. I haven’t been out on the deck in about a week and was startled to find more Zinnias in full bloom. Don’t they know it’s late October? Most had died and I thought part of my morning chore for this designated “deck clean-up” morning was going to be to shut the flower pots down for the year. I just couldn’t do it… not with brand new Zinnias raising their beautiful colorful heads to celebrate this Fall Fashion Show going on in mid-Maryland right now!

I explained to Chloe how surprised I was to see brand new blooms on the Zinnias. Patient dog that she is she listened attentively, but I could tell she didn’t really understand what all the excitement was about! But you see? The Zinnias were not finished…

Disabled and finished?

This week I received a tearful email from a fellow HLAA (Hearing Loss Association of America) member. She was upset about the state of her local chapter. It seems they are having trouble attracting new members and the old members are rarely participating. They are SPECTATORS, but not PARTICIPATORS. A peer mentor at one of the local hospitals that performs cochlear implants for people in our area, she explained to me that she cannot even generate any interest in those relatively new to hearing loss.

“You can see that the word ‘disability’ has sunk into their very soul, impacting the way they choose to live their lives,” she explained. “I try to explain to them that hearing again through a cochlear implant is something to be celebrated! It is not normal, perfect hearing, but it is hearing and choosing to stay involved in the hearing world in which they were a part! If you talk to them you can tell they are depressed, defeated, and ACTING disabled. It’s as if all the color has gone out of their lives.”

I thought about my own support group and local chapter of HLAA. There are a handful of people who volunteer for everything, work hard at making sure the chapter is well run, make it a priority to attend each month, and reach out to other members who are on the ‘roll’.

DSC03113

These folks stand out. They smile, are involved in numerous OTHER community endeavors, love people, make a difference… they are colorful. In spite of their hearing loss, deafness, communication needs and problems, they are noticeable because of their focus on ABILITY instead of DISABILITY.

dAp

Fidos For Freedom participates in dAp programs throughout Maryland. Chloe and I have been to two of these early on in our training together. The disABILITY Awareness Program was started in the late 1970’s. The intent of dAp is to educate children and their teachers about disabilities, what it’s like to be a person with a disability, and to increase acceptance of people who may be ‘different’. I’m given the opportunity to talk about what I CAN do. Fidos For Freedom has been instrumental in helping me to be independent again. I have learned so much about what it means to live “in spite of” a disability. There are so many different disabilities represented in our client family. For many, being partnered with a canine partner helps them focus on the “can do” instead of what they cannot. Many enter the training program at Fidos pretty much beaten down by the fact that their life is now completely different because of a disability. They finish their training in full bloom. They stand out and make a difference. Their independence grants them the courage to re-take their life.

One Voice

I love people with disabilities. Near and dear to my heart are populations with hearing loss, deafness, Meniere’s disease and brain injury. I belong to these populations. I wrote back to my friend this week and tried to encourage her. Many small chapters of organizations like HLAA have to make the decision to perhaps only meet quarterly instead of monthly. What you can’t do is “close shop”. If you make a difference in ONE person each year, is that not important?

Do you feel alone? Ever feel as if you are carrying the load alone and GEE HAS IT BECOME HEAVY? You may be one voice. Are you caring for an elderly parent who has Alzheimer’s? Are you a stay-at-home mom with three little ones under 5-years-old and no one at home SPEAKS ADULT? Do you work with people with addictions, and feel your heart breaking every time someone returns to their drugs or alcohol? Do you love someone with TBI who will never be the same person they were prior to their accident? Do you or a loved one live with a terminal illness?

You can remain in FULL BLOOM … in spite of it being late October. You can be ONE VOICE that makes a difference. An amazing thing can happen to ONE VOICE that remains in full bloom in spite of the season. It may take time and a lot of effort. It may not even happen in your lifetime. But one voice is usually joined by another… and then Another… and ANOTHER. You may never discover your own influence this side of Heaven. Be influential anyway. Stay in full bloom. Be one voice… one that makes a difference. If your life is all that is changed, is that a bad thing?

Some of you may cringe. I love Barry Manilow. (Sue me!) My older brother got me hooked on him in the late 70’s. This is a short song, but I ask you to listen to it and think about it from the point of view of making a difference.

Denise Portis

© 2009 Hearing Loss Journal

Not an Exact Science…

Just because I can zero in and concentrate, doesn't mean I'll always get it right!
Just because I can zero in and concentrate, doesn't mean I'll always get it right!

Having a hearing assistance dog has its advantages when I do not hear “surround sound”. I have trouble with directionality as I only have one cochlear implant (and due to my balance problems very likely will not ever have a second). I have learned to pay attention to where Chloe is looking in order to figure out from what direction a sound is coming. The only problem is… sometimes I don’t pay attention.

Today our sweet cat, Kiki, found herself stuck due to my inability to hear and failure to take note of WHY Chloe was parked on the stairs instead of next to me. Kiki decided to squeeze between the door and the glass storm door in order to better partake of the sunlight and “view”. I did not know she was there, and closed the door because of the draft as I walked by. Thankfully, my husband came home about 10 minutes later and saw “cat on glass” as Kiki was smushed like a sardine between the storm door and metal door. We retrieved her amongst a chorus of “poor kitty”, and “I can’t believe I did that” while Kiki just purred and basked in all the attention. yellowchairkiki Having a hearing assistance dog is not an exact science when it comes to utilizing her amazing ears if I don’t pay attention to where she is fixated! I really have to pay attention to why she is parked and pointedly looking in one direction!

Reading Lips/Speech Reading

Some people believe that everyone with hearing loss read lips well. Actually, they call it speech reading now, as really you are trying to discern what someone says solely by what you see on their mouth as they speak. Speech reading is not an exact science. As a matter of fact, mistakes are often made by even the best of speech readers. Now that I hear as well as I do with my cochlear implant, I have lost the ability to speech read to some degree as I may once again rely on what I am hearing to understand in many situations. I do still rely on speech reading in noisy environments, and I will always be a big fan of closed captions. Several friends (God bless ’em) have started posting video links in Facebook that have the lyrics attached as well. This only enables me to hear BEST, so I am always thankful for what I see in addition to what I hear.

A couple of nights ago, my daughter was talking to her boyfriend on Skype. They go to separate colleges and during the school year have a “long-distance” relationship. My husband and I graduated from different colleges as well, but our only hope of contact was through a weekly letter (through good ol’ fashioned snail mail) and the occasional phone call. I was still able to use the phone well at the time, and waited by the pay phone at the end of the hall every Friday night. Technology has changed “long distance relationships”. My daughter actually has “candlelight dinner dates” with her boyfriend via Skype. They talk almost daily either “face-to-face” with Skype and webcam, or a minimum of numerous texts sent immediately through the easy access of cell phones. I popped my head in the other night and found them “talking”. My daughter “muted” the long-distance boyfriend so that she could ask me what I wanted. (Another interpretation, “Can’t you see I’m busy? Hurry up!”) Her boyfriend was still talking, so I told her what he was saying. She quickly typed (as you can both speak and type thru Skype) and asked him if what I said he asked was what was actually said. I was right on the button! She unmuted BK (the boyfriend) and both were amazed at my ability. I immediately chalked it up to “luck” and reminded them both that it isn’t a cheap parlor trick! It takes work and concentration to really be good at speech reading. I simply got lucky!

Think About What Looks Alike

I picked up a good HoH (hard of hearing) habit from a friend in California in 2006. She coached me to learn to repeat to people what I thought I heard even if I knew it could not be right. By doing so it did several positive things:

1. It allowed the person with normal hearing to only have to repeat what I got wrong, saving them the time and possible exasperration of repeating everything verbatim.

2. It allows the person with normal hearing to begin to understand what things sound like to ME… a person who hears with a cochlear implant. They learn to be experts at rephrasing things and finding synonyms to explain the same comment.

3. It allows both parties to see the “funny” in trying to make sense of what I hear. I both SEE in speech reading and hear with a cochlear implant.

4. It allows the HoH person to learn to extend grace and to accept that mistakes are made and most people are eager to help clear up the confusion. It creates a positive communication environment.

Stop for a moment and think about what looks the same on the mouth when words are enunciated. Some mistakes I’ve made:

1. I thought someone walked towards me with an admiring glance and said… “Sweeeeet…. heart”!

Really they were looking beyond me and saw a red corvette… they were saying “Sweeeeet Car!

2. The words six and set look the same as SEX. (yikes!)

3. Mom I’m knitting hard!

Which was really, “Mom, I need the car!”

4. Mrs. Portis, I forgot my paper. Canons get formica? (I was really scratching my head in confusion on this one)

Mrs. Portis I forgot my paper, can I run get it from my car?

Learning to speech read more accurately, can however, help a HoH person communicate better. My local chapter of HLAA has plans to do a 2 hour “speech reading tips” class in the next couple of months. Some great resources that we will be utilizing, come from CHHA (Canadian Hard of Hearing Association), and include:

“Sound Ideas: Managing your Hearing Loss” manual and video

“Lip Reading Naturally” by Frances Mezei and Shirlee Smith

Think It Looks Easy?

I have a challenge for you. Mute your television and see if you can figure out what is being said. You might be surprised at how well… or how poorly you do!

Some additional resources:

1. http://www.agbell.org/docs/speechreading.pdf

2. http://www.lipread.com.au/Products.html

3. http://www.amazon.com/Lessons-Lip-Reading-Self-Instruction-Edward-Nitchie/dp/1428638008

4. http://www.lipreading.com/

Denise Portis

© 2009 Hearing Loss Journal


If I’m Part of a Majority, Then What is Our Identity?

Denise and Chloe sit next to the Potomac at Harper's Ferry, WV
Denise and Chloe sit next to the Potomac at Harper's Ferry, WV

According to data provided by the National Center for Health Statistics (NCHS, 2006)), 37 million adults in the United States have a hearing loss. This is approximately 14.9% (2007) of persons over the age of 18 living in the United States. Gallaudet Research Institute (2007) states that anywhere from 2 to 4 adults out of every 1000, is “functionally deaf”, but of that number more than half became deaf after the age of 18-years-old. (NOTE: this would be after the acquisition of oral language). As many as 22 out of every 1000 adults in the U.S. consider that they have a “severe hearing impairment”. (Their hearing loss affects their lives and impacts the way that they communicate).

Who am I?

I began losing my hearing when I started having children. At the age of 25-years-old when my daughter was born, I have a very vague and fuzzy memory of thinking I may have a cold as speech sounded muffled to me. At the age of 27-years-old, my son had come along as well and at that point my husband and I both knew that something was up with my hearing. I went to an audiologist and was diagnosed with a moderate hearing loss… “did I want to buy a hearing aid for my ‘worse’ ear?”

Although I am deaf (with a small “d” as opposed to the capital “D” for culturally Deaf folks), I don’t consider myself deaf. I don’t think it’s a matter of denial either. I speak with my voice, and use a cochlear implant and hearing aid to maximize what I hear. For me… this is “normal hearing”. My “new normal”. I’m comfortable and happy with what I hear.

I know sign language, but it is highly unusual that I do. I learned ASL in college because I had two friends in my dorm who were culturally Deaf. I’ve been learning sign and taking classes ever since. I don’t use sign language with other hard-of-hearing people because the vast majority of them do not use sign language. Think about it for a moment. If like most people who lose their hearing, you do so after having learned oral language… won’t you try to continue to communicate in a way that more closely resembles the way that you did before your hearing loss? On top of trying to live with a newly acquired disability, would you want to learn a new language including it’s syntax and grammar, only to accomplish being able to sign to other people who happen to know sign? Doesn’t make sense does it? That is why the vast majority of people who lose their hearing turn to technology, surgery and/or reading lips.

Is ASL a bad thing if you are an oral deaf adult?

I’ve been to numerous hearing loss conventions where the attendance was anywhere from 500-800 hard-of-hearing people. These conventions often hire interpreters for the twenty or so people who use ASL as their primary means of communication. CART (Communication Access Real-time Translation using a court reporter) is also usually being paid for and the many workshops and sessions are also looped or have infra-red technology so that people with t-coils on their hearing aids and cochlear implants can hear more clearly. The small nucleus of folks who use primarily ASL tend to “hang out” together at these conventions. I have seen some very strong bonds and friendships develop. However, they are also isolated at times because they cannot speak to the hard-of-hearing majority who do not use sign. Sure! You can write notes, but I’ve rarely seen the effort made.

So should a HoH (hard-of-hearing) person learn ASL? My personal opinion is that learning a little bit of ASL is a good tool to use at home when you happen to have your hearing aids or cochlear implant out… or should your batteries die. Actually, HoH folks tend to learn Pidgin sign language, or exact signed English. They tend to sign exactly as they would speak in English (which isn’t ASL). I’ve been trying to talk my HLAA (Hearing Loss Association of America) chapter into doing one meeting on “often used phrases in ASL”. I believe knowing these phrases at home will facilitate communication in the situations I mentioned above. It can also be fun to learn a “hand full” of sign. However, most HoH people do not try to use sign language outside the home when they are at work, church or in public. They normally read lips, try to set up ideal listening environments, use technologies available, and often have hearing aids and/or cochlear implants.

I get a little aggravated when I make a doctor’s appointment and they offer to set up “Deaf Talk” for me since my chart is flagged with “deaf”. First of all, I’m on the PHONE making an appointment with them! I explain that I use a cochlear implant to communicate and that I speak English and prefer oral language. I suppose my preference is unusual in that I actually teach ASL as an alternative foreign language part-time. However, I do not associate myself with the Deaf (note the capital D) as I use my voice to talk in public. When I had jury duty this last year, the Frederick County court system had a CART reporter for me to use during that time. It was a very positive experience for both Chloe and I, as the courthouse doesn’t get a lot of service dogs either.

Having a CI and meeting a Deaf person

For lack of a better way to explain it, I have been “mistreated” far more often by the culturally Deaf than I ever have been by people with normal hearing. I’m not sure if it is distinctive to our area of the country, or if the attitude is nationwide now. However, it seems the culturally Deaf as a whole tend to feel pretty threatened by cochlear implants. I suppose I make it worse in that I wear “bling” on my CI, and my hearing aid has a bright red ear mold. I wear my hair up in part, because I really am NOT ashamed of my disability, but also because it helps me in the long run should I miss something someone says. They can immediately see that I “hear differently”. Many culturally Deaf are afraid that if those born deaf are implanted between the ages of 10 months and 2 years (indicative of the current trend) that their very culture is being threatened. Nine out of every 10 infants identified with hearing loss are born to hearing parents. These parents are often choosing the safe, non-invasive surgery of a cochlear implant to give their child the best opportunity at oral language. I don’t believe ASL is in any danger of becoming extinct, however,  because there will always be Deaf children born to Deaf parents who chose ASL. The Deaf have worked long and hard for equal access and equal rights and have a rich history and long-term success at being identified as a culture.

I have been stopped in stores and handed notes by the Deaf asking why I would choose a cochlear implant. “What is wrong with Deaf?” I put the notes down and sign to them (making their eyes pop open wide), and explain that I was born with normal hearing and that my choice allowed me to continue to participate in the same way that I was born. Some get angry and stomp away, and some try to argue. Only one or two have ever said that I had a right to my choice and that they respect that. The vast majority of encounters were not “pretty”. Most encounters involve the middle finger! (from them… not me!) I’ll never forget waiting for my daughter at Pet Smart, and a Deaf couple stopped and pointed to me and began signing to their son (who was hearing I believe) that “sad, not right. people embrace ‘who they are’, God finish create – appreciate, accept”. I signed to the parents and little boy, that the only “shame” was when people could not make individual choices that they feel is in their own best interests and that choice be respected by others. (At least they had the grace to turn red).

Don’t get me wrong. I love ASL, and use it far more than many HoH people do. However ASL is not my native language. It is not the language of the group of Americans with hearing loss that I have chosen to identify myself with since losing my hearing.

Why are the oral deaf not as visible as the culturally Deaf?

The culturally Deaf have learned to stand up for their rights and have learned to be proud of who they are and accept it without reservation. The HoH crowd, however, tend to buy the hearing aid, and then refuse to even acknowledge they have a hearing loss. They often try to keep it hidden and rarely admit to someone that they may be struggling to hear in a poor listening environment. They may rarely disclose that they have a hearing loss at work, church, etc. They often do not identify with even having a disability. Why is this I wonder? HLAA and AGBell are wonderful organizations for those with hearing loss. Yet, the vast majority of members are those whose hearing loss has become so poor, that it has really begun to affect their lives. In desperation they reach out for the support and information that they need. I often wonder why those who have a mild to moderate loss never seek out organizations like this? I suppose it is because they “get by” just fine. If their hearing loss is not progressive, they choose to live life without the added help and membership of organizations like this. I cannot cast stones, for I did not seek out help until my hearing loss had reached the point that I needed help.

I was pleasantly surprised a couple of weeks ago, to attend an open-captioned Star Trek movie at our local theater. The room was packed, and I only saw a handful of people signing. I saw plenty of hearing aids and cochlear implants. I think it is so important to support showings of feature films with open-captioning. I always thank the theater manager in person or via email. Many in attendance were the hearing spouses, family or friends. My children have grown up with closed captioning, and actually have trouble watching television without it. I never have to twist arms to get my hearing family to attend an open-captioned movie. When you’ve distinct Russian accents and alien tongues in a movie like Star Trek, you can bet that those with normal hearing got more out of the movie thanks to open-captioning!

Many of the organizations who serve those who have a hearing loss and are oral are in financial difficulty. They’ve been that way for over a decade and with the current economy they aren’t due for a major influx of cash or membership. They often have difficulty obtaining grants. My personal opinion is that they should do a major overhaul in the way they reach out to those with hearing loss. They need to change the way they try to raise an interest in order to gain membership. The majority of people with hearing loss do not have a significant loss. These organizations certainly shouldn’t turn their backs on those with significant hearing loss, but new programs and ideas should center around how to raise awareness among those with a mild to moderate loss. Things like the hearing aid tax credit are a step in the right direction as everyone will appreciate some financial help for the expense of hearing aids. The only problem with this tax credit, is that it will be years before it is available to all age groups regardless of their health coverage. I believe more effort should be in providing information to this largely untapped group. What can be done to provide helpful information to this group? What programs can be developed to help them at work, church, and in public? I think if the struggling non-profits who are membership based reach out to this group, it will help to raise awareness. How could it not? The majority of those with hearing loss (those who are oral), will be finally identified as a cohesive group of individuals striving for equal access, and recognition. How do you help a group of people who want to remain invisible, to see the value in becoming a visible and active group? I don’t know the answers to these questions.

I sign when I misunderstand

Although I identify with the oral hearing loss community, I have something rather humorous to share. If I am trying to communicate with someone who has a heavy foreign accent, or with someone in a very poor listening environment (like a mall or restaurant), I tend to sign while I’m talking. It really tickles my kids, for I have tried to communicate with someone who only speaks Spanish and found that I started to sign and voice when I discovered I couldn’t understand them. My daughter has told me that she can tell it is totally unconscious, that she can see me just naturally start to sign when I cannot hear well or understand someone’s speech. My family has actually learned to step up to help when they see me signing as they know that I read their lips and “hear their voices” better. They know if I start signing, that I’m not hearing very well. Sometimes I sign when I’m really tired… fatigue causes me to not hear as well. I asked my husband (who has devoted six years of his life to the hearing loss community in the past) why he thinks it is that I sign when I’m not hearing well. He’s a psychologist and likes to be asked “what do you think?” He believes that it is not that I am switching identities or loyalties by starting to sign in a “pinch”. He thinks it’s a subconsious decision and acknowledgement that I’m not hearing well. He said that other HoH people who don’t hear well stop and say “huh?” or “fake it”. He said that because I know ASL, I start to sign. He’s stepped up to wide-eyed friends with normal hearing and simply said, “perhaps you should find a quieter place to talk… Denise is having trouble. See? She’s signing!”

I do wish the oral hearing loss community could erase the stigma associated with hearing loss. Would it be that we could develop a positive internal locus of control and believe that we are valuable and viable adults in spite of hearing loss. I wish… I wish we could REALLY find our voice.

Denise Portis

© 2009 Hearing Loss Journal

Meniere’s Help

A "modified brace"
A "modified brace"

harpers-ferry-may-07-on-stairs2

Today is a rainy, dreary day. I actually love the rain, because it makes everything so green and keeps me from having to water everything! However, when it’s rainy I do take the extra time to “walk safely”. I’m extra careful on stairs, and I stand up slowly. I don’t do anything in a “hurry” that might move my head’s altitude quickly!

Chloe loves to pick things up for me, so I think when she sees me wake up with a little bit of “weave” to my step, she’s actually looking forward to a day of retrieving “every little thing”. Sometimes I don’t need the gum wrapper, or leaf brought in on the bottom of someone’s tennis shoe, but I thank her and praise her just the same. Actually, it’s probably good she brings me everything, for our Elkhound teenager will eat everything!

Meniere’s is not a disease widely known. Even amongst the hearing loss “crowd”, it is just beginning to get a little more “press”. Here are some of my favorite “Meniere’s helps”:

Hearing Loss Web:  http://www.hearinglossweb.com/Medical/Meniere/mn.htm

NIDCD: http://www.nidcd.nih.gov/health/balance/meniere.asp

The Meniere’s Page:  http://oto2.wustl.edu/men/

Meniere’s Organization:  http://www.menieres.org/

Denise Portis

© 2009 Hearing Loss Journal

The Vest is Really Always “On”

harpers-ferry-october-2008-at-river

All Work and No Play?

Chloe doesn’t wear her vest in the house, and I sometimes take her to places where the “vest” stays in the van. Harper’s Ferry is one of those places… although I make her wear it if we are there during “peak” season because the crowds are so large. Lucky for us we live close enough that we go frequently, and normally NOT during peak season!

It’s good for her to “just be a dog” sometimes. And yet… Chloe doesn’t “turn off” her training when she does not have her vest. On the contrary, she does MOST of her hearing alerts when her vest is hanging up by the front door! I work 4 days a week from home, and so when the phone rings, kitchen timer beeps, or doorbell dings, she alerts me to the fact and “takes me there”. Even at Harpers Ferry we discovered she still realized I couldn’t hear well and would alert when “vest-less”. It was at Harpers Ferry that we first realized that she alerts the same and takes me to whomever calls “Denise” OR “Mom”.

Chloe gets plenty of playtime, but she really seems to “get” that regardless of that vest, I need her ears.

I Feel NAKED!

There have been a few times when I left Chloe at home and went to something without her. When my daughter (who has a horrible phobia of needles) went to get blood work prior to starting college, she needed my undivided attention. As a matter of fact, she not only needed my attention, but also both hands and a knee to keep her propped up after swooning. The girl hates needles!

When our family went to Catoctin Wildlife Preserve, I wisely left Chloe at home. It’s not a great idea to take a working dog to a place where things would think she was “dinner”.

On these rare occasions, I have felt positively NAKED without that leash in my hands. I am so accustomed to her presence and help, I feel very strange indeed to be without her. My husband is always glad to have her along as well, for he gets a little irritated when I slip up and tell him to “heel“.

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It’s Great Knowing She Likes to Work

We were at the bank today taking care of some business for our chapter of the Hearing Loss Association of America. As I sat waiting for the woman I needed to see, Chloe stayed in a nice down/stay at my feet. We finally were able to go back and see the woman we had an appointment with, but were stopped by a man waiting in line. He had big tears in his eyes and he told me how beautiful Chloe was and, “… she just adores you! She watches you non-stop… every move you make! She only looks away when someone new walks into the bank and she flops her tail at them and then turns to stare at you again!”

Chloe loves people, and loves to work. That has to rank right up there to being one of the most important things about a working dog… that they love to work.

My “Spiritual” Vest is Always “ON”

Hopefully I’m a person of faith who lives what I believe even outside of Sunday morning services. I try to be “real” and genuine. My faith has become such an ingrained part of who I am, it’s impossible to separate the two. I get some “good natured flack” from time to time about mentioning my faith on the blog so much. However, I’m here and functioning as well as I do as a direct result of my relationship with Christ. I can’t pretend to be something I’m not, and I’ve completely HIS.

Sure, sometimes my mouth negates the fact I am a person of faith. When I sin? It’s ALWAYS with my mouth. My prayer every morning before my feet hit the floor is “Lord, guard my tongue today!” I pray He can use this big mouth for some good. I’m grateful He does not call the ‘qualified‘, rather He ‘qualifies” the called. May I always live like my “vest” is on!

My Teacher Hat is Always On

I guess because I’m a teacher, it’s really hard for me not to be in “teacher mode”. The kids tease me sometimes about making “everything into a learning session”. From correcting their grammar when speaking, to insisting on learning the history and background of a place we are visiting for the day, I end up in a “did ya know?” speech nine times out of ten!

Now that I’ve started back to school myself with the goal of eventually teaching on the community college level, that will likely get even worse. I’m working towards my Masters in Psychology. I noticed on the online biography “background” page, that I’m the only one pictured in my profile with a dog.  (smile)

She’s THAT much a part of my life…

Denise Portis

© 2009 Hearing Loss Journal

What Came First?

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The Chicken or the Egg?

What came first, the chicken or the egg?  That phrase brings a smile to my face every time I come across it.  It has been the cause of many a debate from both my childhood and my present.  I suppose I’ve always been surrounded by people who love to argue a point.  Everyone knows the chicken came first.  If you disagree with that… well, you’ll need to write your own post!

In life there are many cause and effect changes.  These are either passionately discussed because of more serious consequences that can occur, or worse – not discussed at all due to what many may view as a “taboo” subject.

I’ve always been a “worrier”.  I can remember hearing from my mother at a very young age, “Denise… don’t make mountains out of mole hills”. I was also told that if I didn’t have something to worry about, I’d work hard until I had found something to worry over.  As an adult, I prefer to look at my “worryin’ over things” as my way of preparing, planning, and anticipating outcomes.  Believe it or not, “worrying” calms me down.

But I am not misguided in believing that worry is the same thing as anxiety.  I don’t remember being an anxious kid.  “Worrier” – yes, anxious – no.  I do know that I have had anxious periods in my life.  I have a new “friend” who is a phenomenal writer.  I’ve been pushing Lisa to investigate writing a book and hope I have finally twisted her arm in doing so.  Having benefited from her wisdom and straight-forward speculations, I’ll be one of the first in line to buy several copies.   She has been blogging about “anxiety” quite a bit lately. (If you have had problems with anxiety, I encourage you to begin reading her posts beginning here).

I have met many people with different types of disabilities.  I have also met many “anxious” people.  Often, those people are “one and the same”.  What came first?  The disability or the anxiety?

We Can Make Ourselves Sick

One doesn’t have to “google” stress and anxiety very long before they begin to find out these feelings can affect our physical health.  Our body’s immune systems can even be weakened when exposed to stress for prolonged periods of time.  Although “thinking happy thoughts” does not necessarily cure every ailment, being stressed, worried, anxious and pessimistic can certainly hinder our getting well.

Many physicians who specialize in critical care fields have long been taught how important it is to treat the patient’s mental and emotional state as well as their bodies.  Even a patient’s spiritual beliefs can aid in recovery.  Discovering (or re-discovering) hope and belief in God, can greatly benefit a patient who has experienced an injury or life-changing illness.  My husband wrote his dissertation along these lines.  His book is NOT easy reading – smile. Effects of Religiosity on Life Satisfaction Among Survivors of Brain Injury, was written after having seen the direct results of faith on patients with a TBI over a number of years. Terry researched whether or not people with brain injury have higher life satisfaction if they are involved in religious practices. People with brain injury traditionally have one of the lowest life satisfaction scores of any population. They have similar scores to people in prison!  In contrast, if someone with a TBI has no faith – no belief system, they tend to have very low expectations and life satisfaction.

Disability or Anxiety?

So… which came first?  Anxiety can certainly be triggered by “life events”, but it can also be a chemical imbalance in an individual.  Anxiety disorders are serious.  Feeling anxiety – an “anxiousness” – from time to time is not uncommon and even expected in this thing we live called LIFE.  Can a disability, especially an acquired disability, cause us to feel anxious?  Can that anxiety, ignored and untreated, lead to a disorder? Yes… and yes.  However, one can have a disability and learn to “cope”.  Learning to cope, and developing new interests, skills and networks, makes a disability more of a discovery!  One learns how to acquire new ABILITIES.

Being disabled does not mean one is not “able”.  Certainly being deaf and having Meniere’s disease, places me in a disability group, or category.  I don’t consider myself disabled as long as I work hard at being “able”.  A cochlear implant, support group, a service dog and advocating in a positive way, have allowed me to create a way to cope… to live in a normal way.  I’m living a “new normal”. These activities keep me from feeling anxious.

Does that mean I never worry?  Heck no!  But worrying is not anxiety.  If I begin to see a set pattern of anxiousness, I treat that very seriously.  Why am I anxious?  Has something triggered it?  Am I eating right, sleeping well, and taking care of myself?  However, WORRY is different than anxiety.  I have plenty of daily worries that actually allow me to process things and plan my day.

Am I worried when I stand at the top of a stairwell with Chloe in heel, people milling all around me, and the room spinning counter-clockwise as I desperately try to adjust my eyes to the depth of the stairs below?  Well YES!  But that worry has allowed me to take steps (pardon the pun) in making it possible for me to traverse stairs safely. Chloe acts as a counter-balance, I instruct students around me that I’m not listening or talking until I get to the bottom… so don’t bother me, I breathe evenly and fix my eyes on no more than two steps at a time, and before I know it… I’m kissing the floor in relief at the bottom!  (OK, that’s an exaggeration, but I certainly do feel euphoric!)

Do I feel anxious when my cochlear implant batteries go dead?  (DUH)  Of course I do!  But my worrying about it happening at an inopportune moment, has led to a very real plan of action.  I have batteries EVERYWHERE.  They are in Chloe’s working vest, my pocketbook, the van, at home, and in my office. My CI is set up to give me a 20 minute warning beep.  When I hear it, I continue with what I’m doing but I include a few moments to secure new batteries.  I’m an expert at slipping out the battery compartment, punching out the three #675 batteries, and replacing them with finesse and speed.  I’m never “deaf” for very long.

I plan in advance to get 8 to 10 hours of sleep each night.  (Yes, you read that right).  My sleeping a great deal is not a warning sign that I am depressed.  I plan to sleep 8 to 10 hours a night!  I make it a priority, and I’m often the first Portis in bed each night.  I get a great deal of sleep because I’ve discovered that I “hear better” when I do.  It takes a lot out of a person to hear through a cochlear implant.  Lip reading is not easy.  Making sense of the noise in my world takes concentration.  I need sleep to function well.

Because of my Meniere’s disease, I consume less salt and caffeine. I take Manganese and working hard at trying to exercise regularly.  (My sister and I have a New Year’s challenge to each other to do better at this!)

At the beginning of this school year, I worried like crazy about some of the things I’m required to go to as a teacher that are at night.  Meniere’s has made driving at night difficult, as headlights from oncoming traffic trigger vertigo and make it difficult to see.  The light acts as a “beacon” if you will, and my eyes are drawn to the counter-clockwise beams around me instead of the road ahead. I worried about how to tell my director that I couldn’t do things at night. But that “worrying” allowed me to plan how I would present my reasons and requests. She listened, and approved my request to not attend meetings after dark.

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To some people, all the things I do each day to be safe, hear well, and live a full and productive life may seem tedious and strange.  But these things are “my normal”. These plans and daily preparations are not tedious and strange for ME.  Santa Kyersten (my daughter) gave me a cane for Christmas.  It was something on my wish list and for me, a necessary tool to live “my normal” on rainy days when my Meniere’s disease makes my balance much worse.

Disability, not Inability

Being disabled means one must find a way to do the things you want to do in a new way.  My deaf/blind friends enjoy communicating with friends and relatives by utilizing both cochlear implants and JAWS (a screen reader program for those with visual challenges and impairments). My friends who have mobility challenges, use service dogs, walkers, canes or power scooters. Late-deafened people learn to speech read, use hearing aids, cochlear implants and assistive listening devices.  I have chosen to have a partner to help of the canine variety!  Chloe gives me independence and confidence.

I’m not trying to suggest that there are not things that every disability group are simply not able to do. I’m deaf.  I’m not able to have a job that relies heavily on communication by phone. There are jobs I could never do that require being able to hear well.  I’m afraid I’ll never be an Air Traffic Controller!  However, the most empowering thing an individual with a disability can do is learn what they CAN do.  We live in a wonderful day of technology and gadgets.  I can do many things that I would not have been able to do had I become deaf even 20 years ago. When new people come to our local hearing loss support group, we work hard at helping them find ways to continue doing what they want to do at both work and home.  There are times an impasse is reached, and we encourage finding NEW things that bring just as much joy and satisfaction as a past job or hobby.

One is only truly no longer “able”, when they give up and resign themselves to isolation and feelings of worthlessness. Yes… there are things I can no longer do that I once enjoyed. But people who cared “booted me in the backside” and encouraged me to find new things I could do!  I have a disability, but I live a rich and full life.  I feel productive and satisfied with my life.

I’m sure that being a person of faith, has made this transition to a “new normal” easier for me. My life can change, and my abilities may “morph”. God never changes, nor deviates from being my Anchor that HOLDS.  The reality is… HE came “first“, and I work hard at keeping Him there in my life.

Denise Portis

© 2009 Hearing Loss Journal