It’s the Little Things

Deborah is a bilateral cochlear implant recipient. She experienced familial progressive hearing loss, which presented at age 10. Her first ear was implanted in 2005, the second ear in 2008. A native New Yorker, she presently resides in the central Piedmont of North Carolina. She is involved with HLA-NC, is a volunteer at the Wildlife Rehab Center of the NC Zoo, and is a board member of the Brain Injury Association of North Carolina. In her spare time she takes courses at the local college, and enjoys walks and photography in the nearby Uwharrie National Forest

I love being out in nature, taking long walks and observing the world around me. I often capture some of what I see with my camera.  Trees, sky, colorful blooms, rivers and streams, rocks, fungi, ferns. All are a delight to my senses. However, there is nothing I enjoy photographing more than bugs. Yes, bugs. From the stingers to the crawlers, the colorful to the camouflaged, the loners and occasionally those in flagrante delicto. From the time I was a young girl, I loved the outdoors. When my family and I still lived in the city, you could find me in the back of the apartment building, climbing a small fence so I could wander around the grassy patches that remained among the asphalt yard. When we moved to the suburbs, on a dead end street that had many acres of woods adjacent to it, I was delighted! This was still a time in our culture where folks were not so afraid to let their children run around the neighborhood, playing at friend’s homes and backyards. I chose to run around in the woods, usually by myself. I was not yet so hard of hearing that it was a concern, nor was it an explanation for why I preferred solitude. I am still this way today.

I’ve been thinking a lot about how my love for observing and photographing bugs ties in with my experience as a cochlear implant recipient. I was recently in New York for a visit, and one day a friend and I went to visit some museums. She, an artist and therapist, had been curious about my fascination with bugs. As we all know, bugs do not have a great reputation. Much time and resources goes into controlling or eradicating them. No one had ever asked me about this, and I can honestly say I’d never really wondered. I thought about all the people who seem to hate these fascinating beings! Nevertheless, my response was immediate and striking to both of us: it is in the little things that we learn the most about life. The whole world can be found in one of those little creatures. From the smallest of them we can receive the greatest lessons. When I observe a spider building a web, or an ant carrying an object many times its own body weight, and when I consider the role that each bug plays in the scheme of life, I am awed and humbled.

Seemingly Inconsequential

It is the seemingly inconsequential experiences of hearing with my cochlear implants that offer the most striking images of the radical impact that “hearing again” has had on my life.  When I mentor someone who is considering getting a cochlear implant, I have found that sharing the smallest CI moments, such as the one that follows, best illuminates the impact of the ability to hear with the technology.

Six months post activation of my first cochlear implant, I was driving across Colorado to visit with clients I served in a statewide program for individuals with traumatic brain injury. I made a stop at a gas station, and went inside to buy a soda. It was a busy time, and the gal at the register was moving customers through fairly quickly. We spent about a minute together as she rang up the purchase, collected my money and made change, made a joke about the crazy weather we’d been having which made us both laugh and to which I offered a humorous rejoinder. (No, I don’t remember what it was anymore, but she thought it was funny, and that’s all we need to know J ). She wished me a good day and I left the store, still smiling over our enjoyable interaction. Suddenly, a realization hit me with such force that I came to a complete standstill: I was able to have a quick, light-hearted interaction with the girl at the gas station. Tears welled up in my eyes, and I was half laughing, half crying: I had joined the living. Before I could hear again with my cochlear implants, my days were filled with experiences I call “smile and get the hell out of there” moments. If you are not hard of hearing, you cannot imagine how difficult it is to read the lips of everyone encountered each day. Struggling to accept that along the way I left any number of people with the impression that I was very pleasant but a bit slow was a fact of my life. But now I was one of those people who could banter, who could have lots of marvelous little interactions with people if I so wished, and I recognized right then the enormous impact this was going to have on my quality of life. I am sure that until that moment I had not fully comprehended that this is what people do, this is what is meant by “small talk”. It wasn’t long before I realized that I could also eavesdrop. LOL! To my hearing friends I say: Don’t act so shocked! You do it all day long and don’t even think about it! Six years hearing again and I can confirm that it’s not all brilliant commentary. But I like being able to decide that for myself.

So, the next time you see a little bug, think of me, and stop and watch it for awhile. If it’s in your house, don’t stomp on it. Scoop it up and put it outside, and observe it. Discover all those insights and life lessons right in front of you, free of charge.

Guest Writer, Deborah Marcus

© 2012 Personal Hearing Loss Journal

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Why I Love Winter

The woods near our home without their usual foliage…

(PART ONE OF FOUR)

Chloe and I took a walk after lunch today. I had to smile as I saw the snowflakes falling softly around us even though it wasn’t cold enough to “stick”. I just love winter. I love actually getting out IN the cold weather as well. I love bundling up and walking briskly – something I can do even with Meniere’s as my symptoms are usually much more mild in the winter. I love being able to see my breath in the air and being able to smell various fireplaces in use in homes as I pass. However, one of the biggest reasons I love winter might surprise you. As a person with hearing loss, one doesn’t expect to enjoy QUIET.

Winter Can Be So Quiet

When walking, many people are inside where it is warm. So in the wintertime, my walks are often much more quiet than when I go during other seasons. I love the quiet. Don’t get me wrong! I love being able to hear, but I hear best when it is quiet. Am I contradicting myself? (BIG GRIN). Eh… maybe.

Hearing with a cochlear implant is a mind-boggling thing. I hadn’t expected to hear this well again this side of Heaven. When my husband and I realized that my progressive hearing loss would ultimately mean I would not hear at all, we were concerned. Thankfully, through the support and relationships of the Hearing Loss Association of America, we learned that being late-deafened does not necessarily mean the end to hearing. We learned about cochlear implants and I took almost three years researching and “talking the much needed ears off” numerous cochlear implant recipients. As thankful as I am for my cochlear implant, it does not mean that I now hear perfectly. As a matter of fact, I become a little aggravated when people act as if my cochlear implant “fixed” my hearing. Yes, I can hear. But it’s a different kind of hearing, and one made more difficult when trying to understand speech in the midst of noise.

So I love the quiet. I hear better. When walking, as the world around me is more quiet compared to other times of the year, sounds that are present are crisp and clear. If it is quiet on our walks, I can actually hear much of what Chloe is hearing.

Chloe can HEAR the squirrels even though she hasn’t yet spotted them…

I love listening to nature. I pick up many more sounds in the winter because of the quiet. The lack of foliage also assists in allowing sound to carry. In some spots of our neighborhood I can even enjoy an “echo-like” effect in the world around me.

We Need the Quiet

I have had numerous late-deafened folks tell me that they too, go “deaf” on purpose. For those of us who are thrifty, it saves on battery life. However, for many it is simply a matter of being mentally fatigued. It takes a lot of effort to understand and communicate using technology and speech reading. People with hearing loss must employ a number of senses to communicate. Those with normal hearing are not required to use much more than their sense of hearing to communicate. I believe this is part of the reason I need 8-10 hours of sleep a night. (Yes… you read that right!) I am mentally exhausted at the end of every day just because I’m communicating with family, friends, and co-workers. It takes work to hear! Listening requires active participation for those of us with hearing loss.

The forest is sleeping during the winter…

When there is a great deal of background noise, I don’t hear well. As a matter of fact? There are times I don’t even try. Case in point… my church:

 

Want to know the noisiest part of every church service? I think it is before and immediately after the actual service. Or, how about when the pastor or minister of worship says, “Everyone take a few minutes to meet and greet those around you!” ? AAAARGH! I try to make myself invisible if you must know. I am petrified someone will come and talk to me because I know I won’t hear them. I’m getting better though when someone approaches with their hand out and a big smile. I’m taking a risk but “betting on” that they are saying, “Hello, how are you today?” I have learned to smile, shake their hand and say a simple “Hello!” My preference in communicating is definitely one-on-one.  I do really well – IF – it is in a quiet atmosphere.

But you know something? My exposure to multiple disabilities at Fidos For Freedom has taught me one very important lesson. We could ALL do with more “quiet” in our lives. Quiet can foster introspection – and friends? I’m big on reflection, meditation, and soul-searching! For many of us, we face many physical battles on a daily basis. We really NEED quiet time. Contemplation may provide us with resolve, a new “plan of attack”, time to absorb new information about our disease/disability, and the ability to recuperate emotionally and mentally. As a person of faith, it is my quiet moments that I can humbly ask for guidance or assistance… or scream for help!

It is often when we are quiet that we can plan and “gear up” for the journey ahead. Victor Hugo said, “One is not idle because one is absorbed. There is both visible and invisible labor. To contemplate is to toil, to think is to do. The crossed arms work, the clasped hands act. The eyes upturned to Heaven are an act of creation.” For some of you, life’s journey requires a little planning. I have a friend who cannot do anything spontaneously. Errands are planned, cleaning specific rooms of the house are planned a whole day in advance. Errands rely on the goodwill of family and friends who are willing to cart her “here and there” as her eyesight has deteriorated. Cleaning is done when the body isn’t on “strike”. Lyme’s and Chronic Fatigue insist that she double-up on recipes when she has enough energy to cook. That way she can freeze things so that she doesn’t go hungry on days she cannot cook meals. She requires a lot of quiet time. For her… it’s not a communication issue. She needs time to plan and to take strategic steps in organizing as best she can her journey. She even needs quiet time to COPE with her disease.

Winter allows me more quiet time. Outside – fewer people are out and about. Inside – family members at home tend to curl up and do quiet things on their computers or may catch up on reading. Like hibernating bears they tend to sleep more. Co-workers are quieter during the winter. Hubby says it is because of S.A.D. Who knows? I do think winter generates a feeling of “quiet” in many people.

I encourage you to find more quiet time. Winter, spring, summer, or fall – the season isn’t important. Finding time to be QUIET and use the time wisely is important to all. Even if you use the time for a power nap…

Denise Portis

©2012 Personal Hearing Loss Journal

Alone “On Purpose”

I recently “re-read” a terrific article by Arlene Romoff, fellow blogger and Hearing Loss Association of America member/leader. She detailed how to navigate the holidays with a hearing loss. (Her article can be viewed here).

I was reminded that these tips work well for most holiday situations, but not ALL. Are you ever invited to holiday gatherings that are not “family” or close friend centered activities? It can be quite difficult to navigate holiday gatherings that you are not in control of – or – that are attended by folks you may not know so well. My husband and I have been attending a terrific church for the past two months and are involved in a small group with similar aged people. A holiday gathering was discussed and planned. Sign-up for the activity began a couple of weeks ago. And you know? For the first time in my life with hearing loss, I explained when asked if I was coming that I’m would not be. I did not feel crushed by the guilt of being so anti-social afterwards!

Perhaps it is because I have learned in recent years that it is OK to be alone “on purpose” on occasion. Now don’t get me wrong! I’m all for relationships, communication, and forging/cementing friendships! I believe in “play time” and in working hard to participate in family and friend activities during the holiday so as to celebrate the season in all its glitter, glory, and historical significance.

I knew from paying attention in this small group at church that “sign up” would begin soon. So I embraced an opportune moment at home with my best friend and husband, Terry, to discuss the issue. I explained that I fully supported his going to “represent us” and that I know from understanding the dynamics and participators in this group… that not all attend with spouse or “significant other” for various reasons. I explained to him that I have chosen to not put myself in extremely unsettling and difficult situations. Sure… sometimes I have no choice. But in this? I did. I explained that the effort was almost debilitating and between fears of being jostled and trying to navigate and hear in an unfamiliar place – in a PARTY no less – well… I was just choosing literally NOT “to go there”. I could see him thinking about my comments and as he is very expressive, I could tell he was thinking back to various activities I had attempted in the past. He was very understanding. He agreed that should things like this come up and he desired to go, he would do so even without me. He knew I’d hound him for details later and appreciate participating vicariously.

It has been a couple of weeks now since that sign-up sheet went around in class. I still don’t feel guilty, but must be so use to that feeling I keep waiting for it to hit me! (GRIN) As it is, I simply think am finally OK with being alone “on purpose”.

Solitary Activities

I love to walk and hike. Thankfully my assistance dog, Chloe, never argues about being a walking buddy so I can depend on her ears and alerts to stay safe while doing something I enjoy. My preference is to walk alone… but I never say “no” to walking with my young adult daughter, Kyersten. However, when walking alone I actually hear better. No one to talk to you see, unless you count a very attentive hound dog. Because of this “lack of people” noise, I’m able to tune into what sounds are going on around me. I’m constantly amazed at what my cochlear implant will pick up – when no one is talking. The sound of crunching leaves, fussing squirrels, the wind blowing the now skeletal branches of the trees around me… autumn is noisy! I can hear traffic sounds both near and far, children on the playground, dogs barking at doors as we traverse the neighborhood, and cats glaring from windows in homes. OK, yeah… that last one was a bit over the top, but I certainly have “holes drilled into my back” by the glares of imperial felines who watch us pass their kingdom’s boundaries!

I love when my house empties out with various family members going to activities, movies, or different shifts at work. I work better in a quiet house. No one interrupts me and I get a lot of work done! When I don’t have work to do, I have learned to not only embrace solitary “down time”, I look forward to it! A hot cup of tea and a good book + turning off my ears “on purpose” = a type of sweet surrender to all that is good in being alone.

I participate in holiday activities and feel close to family and friends. Thanksgiving was at my house (but of course!) and we had company as well… but on my terms. No holiday music, activities were quieter ones, and I heard very well. The experience was not at all stressful. I’m learning, you see…

I DO get to know new people – but usually one-on-one. In large or even small group settings, my focus and concentration are on staying at a place I’m not “lost” in the conversation. That makes it pretty difficult to get to know others! But one-on-one meetings, lunches, or walks allow me to really discover new people. I’m quick to invite and accept the invitations for such outings!

Thankful for… the Internet

Perhaps a bit “off topic”, but as Thanksgiving was this past week, I don’t feel as if I can close this post without mentioning how thankful I am for the Internet. I know people think that you cannot have “real” friends through the Internet. However hearing loss can at times be almost isolating… and not by choice. I have discovered a network of very special friends – all who have hearing loss. I have peeled back layers of “them” to see reveal people who I am proud to call FRIEND. I have met them face-to-face in various locales… usually hearing loss related activities. I never hesitate to participate in groups – even large ones – with my peers. There is no frustration in asking for repeats at these conferences, conventions, and gatherings. I don’t mind folks invading my personal space, for it is always good EAR first. In super noisy environments, paper is always handy and darn if we don’t abbreviate and jot quick notes as good as the younger texting generation! If your batteries go dead, one need simply to remove their implant… scowl at it, and several people nearby will hand you batteries. It isn’t strange to ask hostess or waiters to turn the background music “off”, because no one in the group wants it on anyway. We finish each others sentences and clarify for each other when one voice, timbre, or pitch may not be heard as easily as another. We are comfortable with each other because we live the same kind of life. The Internet allows us to stay in touch “in between times”. For that I am grateful and mindful to acknowledge the power of connecting through this tool – the Internet.

If you are a person with hearing loss and have not yet learned it is fine to be alone “on purpose”, perhaps it is because you have not yet discovered solitary activities that you enjoy. I hope that you will learn to embrace these times. Take up a new activity that is done well as the result of your being alone. I know dynamite photographers, writers, and artists whose skills improved when they learned to embrace their own alone time. What hidden talents and skills have you not yet honed but could do so should you choose to be alone “on purpose”?

Denise Portis

© 2011 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

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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’.

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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.

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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