Category: invisible disability

It is Easier to Act Your Way into Feeling…

Published on by hearingelmo4 Comments
Things will get better…

Our pastor at Weem’s Creek has been going through the story of Elijah. Interesting guy, this old testament prophet, Elijah. Through him, God shut off the rain for a long period of time. He put the false prophets of Baal to shame by having his own sacrifice (soaked in water) eaten up by fire called down from Heaven. But… Elijah could be a whiner.

Not only could the man whine, but he could exaggerate as well. After a particularly spectacular display of God’s might – working through Elijah – he claimed to be all alone and the last of his kind (a prophet). Neither were true. Elijah became depressed. God decided to force him into action, and it eventually changed his outlook.

Pastor Orr used a quote, “It is easier to act your way into a feeling, than to feel your way into an action”. I looked all over the Internet for who actually said that. Although I found plenty of examples of people USING the quote, I was unable to actually find who said it “first”.

This quote really hit home for me. I was contacted this last week by a man who follows my blog. I asked his permission to share part of that email.

“I can know that I need to change my attitude about my disability, but knowing and doing are two different things. How do you get to where you know your life is not over after acquiring a disability when you are stuck on thinking your life is over?”

I’ve been very open about my own struggles with depression. Would I have struggled with depression had I not begun to lose my hearing at the age of 25-years-old? Very possibly. But I do know know that there is a correlation between depression and disability. Research has shown that the degree of depression in people with disabilities is directly connected to their own personal acceptance of their disability (Townend, Tinson, Kwan, Sharpe, 2010). You need to accept your “new normal”. I DO realize it is easy to say, but there really IS life after disability.

I realize we all struggle with different things. Some chronic illnesses and disabilities impact important life functions such as mobility, independence, and quality of life. Being late-deafened is minor to having Meniere’s disease in my own life. As a matter of fact, my husband noted recently that Chloe does just as many balance-related tasks as she does hearing alerts (if not more) – and she is a certified hearing assistance dog. When we have a major weather system stall out over the top of us (my main vertigo trigger) I can really struggle to even get up the nerve to leave the bed in the morning. And let me tell you… it can require nerves. A recent fall left me black and blue from shoulder to hip, with an anxious husband trying to decide whether or not to call 9-1-1 as I kept losing consciousness. (Life with Denise can be exciting – grin). However, when the sun shines, my balance related symptoms are minor. I’m very aware there are courageous (and inspiring) people who do not get “sunny days”. They do not have a break in the degree of disability that directly influences the quality of their lives. Acceptance for them is different and I acknowledge may be more difficult. Regardless, one does have to accept where they are in terms of a “new normal”.

Did you know that acceptance of your “new normal” can not only influence depression, but being depressed can actually worsen your disability? I have personal experience with worsening hearing, balance and vertigo when I happen to also be in a downward spiral in depression. Karp, Skidmore, Lotz, Lenze, Dew, and Reynolds (2009), found that symptoms of specific disabilities actually worsen when the individual is also depressed, stressing that depression needs to be taken seriously and treated. I have a number of red flags that I have set up to determine if I am becoming depressed. I know and have experienced the dangers of depression. Having a “blue” day or two is different than depression. Having lived with it, I know what it “looks” like and stay on the look out for specific clues that tell me I need to seek help.

Living with “It”

One really CAN live within a “new normal”. This may mean a acceptance of a  change in your health. Perhaps you are single when you thought it would be “til death do us part”. Death may have indeed parted you from someone you counted on emotionally and physically. So how do you accept where you ARE, and move on to living a victorious life? I truly believe we have to simply take action. Our “feelers” cannot really be trusted. Don’t get me wrong. I believe compassion, mercy, and love are important. But our hearts – our “feeler” – cannot provide a new, healthier way of acceptance.

What kind of actions can we take? Many of us become involved in organizations that provide support for a specific disability we may have. Within these types of organizations, there are numerous ways to get involved. The Internet makes this connection simple. There are a number of community service projects that can use the help of volunteers. Even small communities have opportunities for service. Some people with disabilities prefer to be involved in areas of service that are not directly related to their disability. If you want to take action and get involved in helping others – LOOK. The opportunities are there. Giving back to others is a primary way in which people feel valued and useful. Getting active in giving back to our communities may actually change the way you FEEL about your own disability. We need a purpose.

Leo Rosten

“I think the purpose of life is to be useful, to be responsible, to be honorable, to be compassionate. It is, after all, to matter: to count, to stand for something, to have made some difference that you lived at all.” —Leo C. Rosten

Denise Portis

©2012 Personal Hearing Loss Journal

Karp, J., Skidmore, E., Lotz, M., Lenze, E., Dew, M., & Reynolds, C. (2009). Use of the Late-Life Function and Disability Instrument to assess disability in major depression. Journal Of The American Geriatrics Society, 57(9), 1612-1619. doi:10.1111/j.1532-5415.2009.02398.x

Townend, E., Tinson, D., Kwan, J., & Sharpe, M. (2010). ‘Feeling sad and useless’: an investigation into personal acceptance of disability and its association with depression following stroke. Clinical Rehabilitation, 24(6), 555-564.

 

 

If Fish Aren’t Stupid…

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I love it when I learn something new. Even when that learnin’ means that it contradicts something I previously thought was true. I grew up on a farm/ranch in SE Colorado. The families I knew, including our own, had all kinds of animals. Common critters included horses, cows, pig, sheep, chickens, turkeys, peacocks, ducks, geese, and even a llama or two! Something you didn’t see a lot of in the family rooms of various ranch houses were aquariums. We had some big ol’ goldfish that grew to an astonishing size in the cow tank near our house. What was even more astonishing than their size is that they survived the frozen tank winter after winter. I can’t remember who first told me that fish are stupid. This was long before “Finding Nemo” even came out in theaters, with Dory convincing us all once and for all that

fish.

are.

stupid.

After I went away to college and married a city boy, I actually lived in town big enough to have cable television. I found that I had a lot of years of catching up to do on Animal Planet, the Discovery Channel, and many other educational animal shows. However it wasn’t until my daughter’s boyfriend – the one who happens to know all there is to know about owning a freshwater tank – put up a couple of aquariums in our home on behalf of beloved daughter, that I began to see freshwater fish up close and personal. As a matter of fact a big 30 gallon tank sits behind my desk, so it is pretty hard to miss the freshwater angelfish swimming around the tank. I very soon discovered that my preconceived notion about the stupidity of fish was – well – WRONG. They really do NOT have 30 second memories. They are affectionate, can remember the easiest “trail” through the freshwater plants to circumnavigate the tank, will follow a person around the tank to “beg” for food, they can be aggressive and yet can be tame enough to actually take blood worms from your fingers. They will live in harmony with other types of fish (but not all), and seem to actually play with each other occasionally. Don’t get me wrong. I’m not ready to whip out an IQ test to see how they fare, but I really no longer believe that fish are stupid.

Other Wrongs – Now Corrected

I just turned 46-years-old this week. That is really hard for me to wrap my mind around. I remember when my mother turned 46-years-old, I was a very young and immature 23-years-old. I remember filling out her birthday card to send from my little apartment in Chattanooga to her “home on the ranch” in Colorado and thinking… “Wow. Mom is O.L.D. She is definitely entering her “senior” years now.” I’ve got to tell you now that I’m 46-years-old myself? Well, let’s just say I want to open mouth – insert foot.

I also grew up with very limited experience with any person with chronic illness or invisible disabilities. I did not have very much experience with people with even visible disabilities. Growing up in a small farming community limits one in that way I guess. It wasn’t until I became deaf and developed Meniere’s disease that I first really began meeting people of all kinds who are “differently abled”. Having an acquired disability today is much different than it use to be simply because we have the Internet that connects us to each other and to a wealth of information as well. I grew up believing that people with disabilities were to be pitied. Knowing what I know now about a community of which I am proud to be a part of, pity is the last thing any of us want. I’m constantly amazed by the perseverance and strength that I see in people with all kinds of various “differences”. I hate to even use the word disability, but it is the language present in our current laws that protect the rights of those who have them. A fellow client from Fidos For Freedom, Inc., first introduced me to the term “differently abled”. I find that this phrase much more accurately describes those who live a victorious life despite any physical, mental or emotional differences they may have. Through networks such as the Hearing Loss Association of America, Cochlear Americas, Invisible Disabilities Community and Invisible Illness Awareness Week I have learned that having invisible issues also creates incredible strength and depth to the human soul. I’ve met some wonderful people who have taught me how to navigate life with grace and a “can do” attitude.

I’ve learned that all of us should “check our preconceived notions” at the door. Assumptions are a discriminatory lot. I do have to admit to also enjoying lessons learned from erroneous stereotypes. After all, that means I’m still learning. You can teach an old dog new tricks! After all, I’ve learned that fish aren’t stupid…

Denise Portis

© 2012 Personal Hearing Loss Journal

It Ain’t All Good

Published on by hearingelmo2 Comments

George Dawson, “People forget that a picture ain’t made from just one color. Life ain’t all good or all bad. It’s full of everything.”

I didn’t write last Monday. I almost let yesterday (Monday) go without writing as well. My reasoning was “why write when I feel so awful”? Sometimes I feel like I owe my readers and peers the truth… but only if it is pleasant and encouraging. When things are not going so good? Well… I’m less certain about how healthy it is for ME to write about it, and risk losing YOU as “compatriots in the ranks”. Right now, “life ain’t all good”. But because it is also “not all bad” I decided to write anyway.

Some things are changing for me. Not good changes. There are things going on that involve other people, so I cannot discuss it. But there are things going on with “just me” that I DO have the liberty to discuss. So I will. If you tuned in to get a dose of the warm fuzzies – this isn’t the post you want to read.

Tell Tale Signs

I have an incredibly bad habit of ignoring the obvious. Perhaps it is a defense mechanism or a form of denial. When something is scary or unpleasant I will push it down and pretend “it” doesn’t exist. I tell myself what my mother always tells me, “Don’t make a mountain out of a mole hill”. Problem is… sometimes it IS a mountain and not a mole hill.

Life can be hard. I have friends who have lost loved ones recently. I have friends who have been diagnosed with scary-sounding diagnosis, some having a good prognosis and some a dire one. I have friends who have close family members battling major health problems. I have friends who are having financial crisis that will change the course of their life and the life of their families. I have friends with children in trouble. I have friends who have been told to plan their funeral. I have friends who have been betrayed and used.

Makes it sound like I have a lot of friends, doesn’t it? (GRIN) One tremendous PLUS of my now, 9-year-old blog, is that I have met a great number of people “virtually”, and literally as a result of my going public with what it is like to live with hearing loss, invisible disabilities, and an incredible canine partner. I have been blessed with guest writers and friendships that have developed as a result of “Hearing Elmo”. You, the reader, have been a source of encouragement to me, a source of advice, and even a source of constructive criticism when I desperately needed it. I am thankful for the sense of “community” the Internet and blogs have given those with disability and invisible illnesses.

Sometimes I ignore tell tale signs in order to “deal with it”. Yes, I know that isn’t healthy but I’m just tellin’ it like it is. Folks who do not have disabilities still live in a body that ages, changes, and may face both minor and catastrophic health problems. However, people with disabilities, those who have learned to be “differently abled”, also sometimes face these same health problems. I’ve often wondered that if certain disabilities make one more prone to health related problems. For example, if you have arthritis, fibromyalgia, or chronic fatigue syndrome, perhaps you’ve put on some weight because you cannot easily exercise or lack the strength and energy to do so. As a result, diabetes or heart disease are now knocking at your door. If you have paralysis or problems with mobility, perhaps you have also developed circulatory problems. I am late-deafened and have Meniere’s disease. I actually hear voices really well in “prime” listening environments, and even do fairly well in really noisy environments with poor acoustics. I fall a lot though. When I do, I normally hit my head. Usually it is just an “ouch” moment where I rub the sore spot and go on about my business.

However, in the last year I have woken up a couple of times now – sprawled out in a heap with my dogs curled up asleep next to me. One time, a matter of hours had to have passed because it was much darker outside by the time I came to. I discuss these things with my husband and um – sort of with my doctor. I have a feeling that I’ve bumped my noggin’ often enough in my adult life, that there may be consequences to that. Thankfully, I’ve learned what a lot of my triggers are and can identify 95% of the time when I need to sit down,

NOW

no matter where I’m at

or who may be watching

or what I may be sitting in.

My eye prescription has changed 3 times in the last 11 months. Most mornings I wake up and my extremities are numb. On really bad days, I still cannot hardly feel my fingers well enough to type by my afternoon classes. I’m having all kinds of “female issues”. My balance is worse than it ever has been. Much worse. I have tried to tell myself that I am stumbling more because I’m older. I turn 46-years-old this month. I’m very good at justifying things! Don’t we tend to do that when something is “off”? My doctor is working with me. When classes are over in May I will be busy getting a lot of tests. Fun, fun (rolls eyes).

But Gee… It’s Not Fair

I don’t care who you are. The old adage, “when it rains, it pours” is only positive to a farmer. No one likes change. Nobody likes problems. No one embraces tragedy. We may have a “Bad News Not Welcome” here sign on our house door. Heck… it may be tattooed on your forearm. That doesn’t mean that bad things are not going to happen.

Life is just not fair, is it? I mean… we don’t get what we deserve when we’ve done something right. And dang, if we don’t get what we deserve when we do something WRONG.

Oscar Wilde: “Life is never fair, and perhaps it is a good thing for most of us that it is not.”

Bill Gates: “Life is not fair. Get use to it”.

(Unknown): “Expecting the world to be fair to you because you are a good person is like expecting the bull not to charge because you are a vegetarian.”

Matthew 5:45b: “For he makes his sun rise on the evil and on the good, and sends rain on the just and on the unjust.”

Most of you have already learned that life isn’t fair. We deal with it. We have to do so. There are no real alternatives.

We adjust.

We learn.

We fight.

We will lose and we will win. Regardless we DO deal with it. That can mean we do so successfully and with pizzazz. It may mean we do so poorly and like a drowning victim, struggle and pull others down with us. We always have choices. Maybe not about what we get to handle, but HOW we will handle it.

Recently while shopping at the mall with my husband, he said, “Do you realize that in 2007 you trained for a hearing dog because you needed one. Now Chloe performs more balance-related tasks for you than she does hearing alerts. What does that mean?”

Well it means that I’m changing. Thankfully, dogs are smart and so are the trainers at Fidos For Freedom. You really can teach an old dog “new tricks” – or skilled tasks.

More Than You Can Handle

Don’t you hate it when you are going through something hard and someone tells you, “God won’t give you more than you can handle”? Seriously? I mean… for most of us determination, will-power, and a fighting attitude gets us through. For those like myself who consider themselves a person of faith, we rest in the knowledge that He’s got this… and He’s with us. That doesn’t mean He’s gonna bail us out and smooth the way.

My cousin, a breast cancer survivor, blogs a great deal. I always look forward to reading her posts when “Google Reader” lets me know something new has been uploaded. Recently, she wrote “A Hard Place”. She quoted from a book called, “Kisses From Katie” by Katie Davis. I wanted to share that excerpt with you:

“Remember, God will never give you more than you can handle.” People repeat this frequently; I heard it when I was growing up and I hear it now. It is meant to be a source of encouragement, and it would be if I believed it were true. But I don’t. I believe that God totally, absolutely, intentionally gives us more than we can handle. Because this is when we surrender to Him and He takes over, proving Himself by doing the impossible in our lives. I have learned to accept it, even ask for it, this “more than I can handle.” Because in these times, God shows Himself victorious. He reminds me that all of this life requires more of Him and less of me. God does give us more than we can handle. Not maliciously, but intentionally, in love, that His glory may be displayed, that we may have no doubt of who is in control, that people may see His grace and faithfulness shining through our lives. And as I surrender these situations to Him, watch Him take over and do the impossible, I am filled with joy and peace–so much more than I can handle.”

I’m not a brave person. I’m not going to ask God to give me more than I can handle.

I’m a chicken.

a wuss.

a weakling.

You don’t have to ask God for ANYTHING though, and you still are going to get a dose of LIFE. And so I’m back around where I started. Life ain’t all good.

But it is not all bad.

And so we carry on…

Denise Portis

© 2012 Personal Hearing Loss Journal

Sometimes? You Are Going to Have a Bad Week

Published on by hearingelmo3 Comments

Chloe was having a pretty good week. At least she was until I told her to get in the bathtub. NOT her favorite thing. If “hound dog” could do forlorn, then honey? She’s gonna do FORLORN in the bathtub covered in suds.

While I scrubbed her and told her what an awesome dog she was, intervening during those “I’m gonna shake” moments, I thought about how quickly things can change.

Chloe was happy and excited to get home from class today. She was rough-housing with her buddy, Tyco, when she heard me call her upstairs. She came running with her tail all a-wag. I told her to get in the tub and proceeded to break her ever-lovin’ heart. She is drying and pouting over in the sun as we speak. If I’m lucky, she’ll have forgiven me by suppertime.

Spring has “sprung”, I’m getting a handle on my new schedule, Terry and I just took 2 days away to re-group ALONE (grin), I’m feeling very connected and supported at my primary “free time” activity (Fidos For Freedom Inc., in Laurel, MD), and then it happens. When you can see change coming you can run like mad… or at least brace for it. But sometimes? Well sometimes change smacks you up side the head like Gibbs smacks DiNozzo. It’s completely by surprise. You lay on the floor, dazed and confused, staring up at the ceiling fan thinking, “What just hit me?”

I’ve even let this unexpected negative “change” suck me into an old habit of depression. I could feel it creepin’ up on me. I’m blessed to have a live-in psychologist and I made sure I changed my “8 hours of sleep a night” to 10 hours immediately. That seemed to help. That in addition to some time since the SMACK DOWN, I’m feeling like I can do this thing called life again, despite the newest challenge. Change can be hard and can create a lot of stress. Heck. I was having such a meltdown (as were other members of the family), hubby announced “Let’s go out to eat for supper!” I begged and pleaded and implored him to allow me to fix supper (yeah, right!), but he insisted we go out to eat. We walked out the door discussing these serious issues that “done smacked me up ‘side the head” and half way to the car my husband stopped dead in his tracks and interrupted me saying, “Um Denise? Where’s Chloe?”

You know the service dog who is with me 24/7? The one on the other end of the leash every waking moment of my life? Poor forgotten Chloe stood inside the locked house door whining and whimpering. So yeah. I am THAT distracted by my smack.

There are various proverbs that remind us that life is not easy. Everything is not always going to go well. Sometimes bad things happen. It doesn’t matter if you have disabilities or not. Life can be very, very good. Yet any of us who have lived enough of it know that it can also be hard. I survive because of my 3 “F’s”: Faith, Family, and Friends who care. Surviving is sometimes one day at a time, one week at a time. This is why people with disabilities should take care not to isolate themselves. It’s so easy to do. Isolation is even easier than having to face interacting with others while learning to live successfully with a disability. But isolation is dangerous. We need others. Others help us do that “surviving” thing!

I for one and very glad to see Monday this week.

Chloe, on the other hand, is just glad her monthly bath can be chalked off.

Denise Portis

©2012 Personal Hearing Loss Journal

Time Off

Published on by hearingelmo3 Comments
Chloe's vest comes off and she gets the "beach rules" from Denise. Unaccustomed to being "vestless" in public, she was very attentive and unsure in the beginning

 

As a surprise, my husband reserved a couple of  nights in a motel at Ocean City, MD, while we were on spring break from work. (One of the perks in working for a college). Apparently March is the time to go if you are not a crowd lover – or “sun” lover. Too cool to lay out or play in the surf, but beautiful weather for walking and many opportunities for quiet time.

Chloe is normally “working” when she is in public. Determined to give her some time to just be a dog, I removed her vest for large amounts of time. She was at first a little timid about being without her vest. Once she saw some other canines on leash though, the wag was back in her tail. Even working dogs need down time. People ask me all the time if Chloe gets to relax. I always have to grin. Chloe is almost 8 years old and at home? Well, let’s just say she knows how to relax. She doesn’t wear her vest at home, but she still alerts to timers, my phone, or my name being called. But she naps (and snores), she plays with her buddy, Tyco (our family dog), she has several squeaky toys, she squirrel watches, and eagerly awaits family members coming home.

Chloe enjoys working though. She danced her way on campus just this morning and wagged her way all the way to the elevator. Sometimes I wish some of her “wag” would rub off on me as 7 AM classes on Monday seemed awfully early to me after a week off!

Everyone needs time off. It can be hard to do if you are working to pay bills, save money, or try to get out of debt. But time off can be in small, “mini” vacations. Even an hour or two here and there can be very beneficial in helping a person re-group.

People with DisABILITIES Need R&R too!

I have met a number of people with various disabilities that have confided that they rarely do what others call “fun” things. Think about it for a minute. If people who walk without assistance, hear without assistance, see without assistance, and speak without assistance enjoy things like movies, walking, reading a good book, or hanging out with friends, well? It just may not be that easy for others.

I like going to the movies. I went to see “The Hunger Games” over spring break with my husband and 21-year-old son, Chris. But I don’t get the same level of enjoyment out of movies that they do. Even with Chloe by my side, I am very disoriented in the dark, especially if my cochlear implant is picking up the very loud commercials and previews on the screen. As I make my way to a vacant seat, I am often fighting the effects of vertigo. After I get seated – hopefully in a place where people won’t have to crawl over my assistance dog and I – it takes a number of adjustments to find a good program on my CI to best hear the movie. If I do that, I sometimes find it difficult to converse to the person right next to me too. At times I miss things said in the movie. If I’m with someone I know well, I’m not bashful and will lean over and ask, “What did they say?” There are not any captioned theaters close to my home (although I am glad there are some within an hour’s drive), so most of the time I go to the same movies you would attend. However, not having captions mean I have to really pay attention! Can I just be honest and say that I’m unable to eat popcorn and catch an on-screen conversation at the same time? (BIG GRIN). I have to really focus and concentrate to understand what is going on. So it is still “fun” for me… just not perhaps the same level of “fun” it may be for you because it does take WORK.

For some, sitting down and reading a book may not be “fun”, and it doesn’t mean they don’t enjoy a good book. Some folks have trouble even holding a book, or turning pages easily. Taking a walk may relax YOU, but for someone who has Meniere’s disease it can be difficult to do a simple walk. My world constantly turns counter-clockwise. It is a slow rotation, mind you, but a rotation nonetheless! On high humidity days, the rotation picks up speed – one of the reasons I just don’t try to walk on days like that! So walking on a sidewalk in a straight line takes concentration. I have given up walking with family members. Although I enjoy the conversation, I cannot talk and walk at the same time! I can talk to my walking buddy, Chloe, and she just listens. I don’t have to worry about her end of the conversation and my having to make sense of what she said while still putting one foot down in front of the other. We love to go into the woods on trails and in grassy areas too. This requires even more concentration. I usually shut up at this point as I have to carefully balance each step. So yes… I enjoy walks but probably not on the same level you do.

Despite having to make adjustments and find a new way of doing seemingly mundane things, even folks who are differently-abled need to take breaks. Perhaps even a lot of them! They may be in the form of naps. I am learning that napping or resting is a necessary requirement for many people with certain kinds of invisible illnesses. I require 8-10 hours of sleep a night. (When I tell people that, they FALL OUT, but if it helps you get through a day “hearing well”, you do anything necessary). Others may require a nap – or TWO. They aren’t lazy. They aren’t depressed (although just like anyone, people with disabilities can and do get depressed). They simply require some extra rest in order to continue a day’s work.

Chloe "relaxing" on a mini vacation at the beach. She really knows how to de-stress!

Careful not to judge. You may wonder why someone doesn’t enjoy the same kind of “down time” you do even though you have the same disability. Each person has individual differences in their disability. I have a friend who enjoys running in his spare time. I’m talking about REAL races… the kind where you take off after hearing a starting pistol! He’s an incredible runner and does very well. He is a bi-lateral cochlear implant user. When I first met Sam, I was astonished to hear what he did for fun! Having hearing loss and balance issues, running isn’t something I can enjoy.

I’m not saying we shouldn’t look for others who are struggling with some of the same issues. We can mentor, give advice, and support someone else in a way that will give them the tools they need to live a victorious life. But do be aware that you may share a diagnosis, but have different symptoms, struggles, and issues. We can still be a listening ear and give encouragement. Just be careful about insisting on something that works really well for YOU, because it may not work really well for them.

I’d really love to hear about some of the ways you choose to unwind! What do you do to relax? What is FUN for you? What do you need to do in order to enjoy some of the things others do without accommodation?

Denise Portis

© 2011 Personal Hearing Loss Journal

 

 

 

 

 

Commencement

Published on by hearingelmo4 Comments

This past Sunday, my pastor spoke on discipleship. In discussion of what discipleship actually is (growth), he discussed how some people may get confused that at the end of twelve years of high school they graduate and participate in commencement. Commencement is not the end of something; rather, commencement is the beginning of the rest of your life. However, for some that may be the defining moment of their life – the culmination of all they will accomplish.

According to dictionary.com, commencement is a beginning, or a start. Merriam-Webster defines it as a point in time in which one “enters upon the next”. In just a few months, commencement will take place at a number of schools. At the community college where I work, reminders are going out to students reminding them to petition to graduate by a certain date. At Fidos For Freedom, a service dog and therapy dog organization, commencement takes place at the banquet that takes place each May. Clients who are “graduating” this year are already gearing up for speeches, festivities, and recognition of a completion of training.

Yet these exercises are not an ending to anything. Rather, they are a beginning. For college students they may be transferring to a four year college to obtain a higher degree. It may mean looking for that ideal career. For clients at Fidos For Freedom, it is the start of a new life of independence – with trainers and “family” in the wings should any further assistance be needed.

Safe People

The topic of my favorite book, “Safe People”, has been a recurring theme in many of my discussions with family and friends lately. I actually dug my copy out to read it again, because I found myself recommending it to several different people. Learning to identify and avoid unsafe people and relationships can be a hard-learned lesson. I think the truths that have permanently etched themselves on my heart and mind from this book, are how to be a safe person MYSELF. For me, it was reaching a point in time when I could turn my back on the past and boldly face my future. Sure! I took lessons learned from the past – in my relationships, problems, and successes – but armed myself with those lessons to be better equipped for my future.

It has been a commencement for me. Like Merriam-Webster explains… it is a period of time where I chose to “enter upon the next” chapter of my life.

Progressive Illness/Disability

I think one of the frustrating things about having progressive hearing loss, or chronic illness/disability, is that one may commence living life with a new charge for life , equipped to be as independent as possible, only for changes in our health to take us back to square one. Prior to my cochlear implant, I remember learning to cope with the telephone, conversations in crowded places, and learning to speak with people with poor communication habits. However, in a matter of months my hearing would take a dive and I would discover that what worked last month, didn’t work at all now! Like most families with small children at home, we lived paycheck to paycheck. We pinched pennies and scrimped and saved to purchase an amplified telephone for me. For five or six months I was in telephone heaven! I used the phone every single day with confidence and enthusiasm. It didn’t take long, however, before I was struggling to even use that new gadget. I earned a little extra time by using it when the kids were outside and the house was relatively quiet. What was once easy became increasingly difficult. Eventually, the frustration of what I wasn’t hearing, despite hearing aids set to t-coil and begging people on the other end to speak clearly into the phone, had the phone collecting dust from lack of use. I’d talk to other HoHearies and get some new ideas. At some point though? The phone became a thing of my past. I had to come up with ways to contact people other than the phone. For the late-deafened community, the emergence of email, texting, and even FaceBook became very real “life-savers” in terms of being able to freely communicate with others. Although I hear well enough on the phone now that I have a cochlear implant, these other forms of communication are still my own first choice.

Resilience is a Special Kind of Strength

Many readers of Hearing Elmo have various disabilities, invisible illnesses or chronic health problems. For some, those difficulties are progressive and force them into a constant state of evolution. This can actually be healthy. (I see some of you grimacing out there!) Yet progressive illness can produce resilience – the likes of which create a strong and capable individual who can face life’s problems with the confidence earned through experience. Resilience is a special kind of strength. These individuals know that living successfully with progressive health problems is simply adopting an attitude of commencement.

Some people never graduate. They never enter that next stage of life. Even though the past may be painful, they cling to it with a tenacity that may stun family and friends. If they have progressive health problems, they may be stuck in the grief process. The grief process is a PROCESS. In a healthy situation, one moves from one stage to the next, eventually reaching acceptance and a new normal. Even psychologically we can get stuck in the past. Everyone else has moved on, but we have super-glued ourselves to unresolved situations instead of letting go and moving on with our lives (like everyone else has). Living this way yields toxicity to both ourselves and to others. We become “unsafe people”. It can have a negative influence on our relationships, self-esteem, and emotional/mental health. Dr. Seavey addresses how to face the future in a terrific article that can be accessed HERE.

Can you look back and see different points in your own life where commencement took place? Using all you learned in a specific period of your life, you chose to begin the next chapter of your life. May we all view commencement as springboard to usher in a successful, victorious future and not as a monument that designates an END!

Denise Portis

© 2012 Personal Hearing Loss Journal

Walk a Mile in My Shoes

Published on by hearingelmo4 Comments

Gonna change directions here today as the death of Whitney Houston coincides with something I am seeing more and more in the disability community.

It doesn’t matter whether or not you like Whitney Houston. What I am disappointed to see is some of the comments and “hatin’ on” this artist since her death. I actually saw on one person’s Facebook that drug addicts and alcoholics get what they deserve. “Someone with so much talent shouldn’t have wasted it”

Wow. I mean REALLY?

Unless you were thrust into fame and fortune at a relatively young age…

Unless you had to deal with the media on a daily basis, giving up any hope of privacy…

Unless you married for love and were crushed by disappointment…

Unless you raised a child as best you could in the backdrop of an industry that can be unforgiving…

Unless you developed an addiction because of life’s crushing problems and entered rehab while the whole world knew it…

Unless you made mistakes and fell back into bad habits – all while the whole world watched…

… then keep your mouth shut about Whitney Houston.

Why Does This Upset Me? Why Should it Upset YOU?

Anytime people begin to criticize and judge someone else a change takes place. Amnesia.

I rarely hear someone criticize and judge someone who is just like THEM. It usually happens when someone is different than you are. Criticizing is easy when we don’t walk in that person’s shoes. Judging is a simple task when we cannot hope to understand what really caused someone to do something when they are different than we are. We forget all the times we have been hurt for being judged and criticized by people who do not understand our own choices in life.

Wanna get me ticked off? Criticize and judge someone who chose to mitigate their disability with a service dog when you don’t live with a disability. Sometimes even others within the disability community may scratch their head and wonder why a person would choose a service dog when “they have the same disability you do”. What they may not know is that there ARE various differences between your disabilities. Your lives may be different. They may have 24/7 help that you do not have access to in your own life. Why don’t we celebrate “whatever works”?

In the hearing loss community, I know people who criticize people who don’t allow “nature to take its course” and embrace their deafness. To some, if you do not learn ASL then you are shunning a community that could be your family. For others who have accepted technology and/or surgery to stay connected to the hearing world, they may criticize those who have learned ASL for various reasons – personal reasons! I know people who criticize other people’s choices about hearing aids or cochlear implants. Why are we prone to criticize anyone who makes a different choice than what we have made for ourselves?

I think perhaps it is a form of self-protection. We may somehow feel that if someone who is very similar to us chose another path, that their choice may mean that our own path was a wrong one. It may be a form of defensiveness. If we see someone successful at living life with a disability, we may feel the need to criticize because we still have some problems with our own disability. If we see someone floundering at living life with a disability – and they chose another path? Many point and say, “I told you so”.

We could all learn to be more compassionate. We could all learn to listen more and keep our mouths shut.

“When you judge another, you do not define them, you define yourself.” –
Wayne Dyer

“If you judge people, you have no time to love them.” –
Mother Teresa

What May Happen if You Reserve Judgment

If you can keep your opinions to yourself, you may just make some discoveries:

You didn’t understand why they did what they did until you got to know them better.

You misunderstood their choice

After learning more about the person, you actually agree with their choice.

After time you find that you still would have done it differently yourself, but it seems to work for them.

If you can keep your negative opinions to yourself and instead pray for and encourage that person, you may discover a…

FRIEND who has the same taste in shoes!

Denise Portis

© 2012 Personal Hearing Loss Journal

Why I Love Winter – Restoration

Published on by hearingelmo1 Comment

 

Part Three of Four…

February starts this week. This winter has been a mild one in my neck of the woods. Very little snow and mild temperatures make many folks exclaiming “What a terrific winter we’re having!” I don’t begrudge the milder winters to those that enjoy them. I do love my snow though! When we have more than our share of winter weather, I’m happily out in it directly after a snowfall, shoveling and scraping and tossing the “white stuff” around!

Some of nature goes “dormant” during the winter while other types of plant life may just conduct photosynthesis at a reduced rate. Animals may hibernate, or only move about sparingly to limit calorie burning. Our winter has been so mild the squirrels have been scampering about much like they do in the autumn. I know for a fact the raccoons are out and about for we finally had to break down and purchase “raccoon proof” trashcans. I’ve seen deer near the creek below our home. So have the dogs:

Foxes stare at us from the bushes and shrubs at night when we take the dogs out for the last time. Animals are busy, busy. The trees and perennials are just – C o N f U s E d.

When I think of winter, however, I think about all the restoration that is taking place. Nature may not LOOK alive, but it is. Many types of life are resting, preparing to get very busy producing new growth or replenishing body fat. Growth spurts cannot happen without winter and the dormant phases many types of life experience. This period of restoration actually prepares and allows this growth.

An old, but favored song about the seasons says it much better than I am able to describe:

Every Season

Every evening sky, an invitation
To trace the patterned stars
And early in July, a celebration
For freedom that is ours
And I notice You
In children’s games
In those who watch them from the shade
Every drop of sun is full of fun and wonder
You are summer

And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and was to come
You are autumn

And everything in time and under heaven
Finally falls asleep
Wrapped in blankets white, all creation
Shivers underneath
And still I notice you
When branches crack
And in my breath on frosted glass
Even now in death, You open doors for life to enter
You are winter

And everything that’s new has bravely surfaced
Teaching us to breathe
What was frozen through is newly purposed
Turning all things green
So it is with You
And how You make me new
With every season’s change
And so it will be
As You are re-creating me
Summer, autumn, winter, spring!

Life Restored

In my own life I have periods of “winter”. Frankly and honestly? I have been more dead than alive during specific life seasons. I don’t know if I could even call it “dormant”, but I do know life continued for spring eventually DID come.

Experiencing deafness as an adult and acquiring a balance disorder is never a welcome addition to life. One doesn’t ASK for disability, chronic illness or invisible difficulties. Yet, some of us are asked to walk this road. I wish I could say that I have always accepted what has come with grace, humility, and courage. I cannot.

Depression is an ugly thing. It comes in many forms. Depression also spawns a number of different symptoms and feelings in individuals. For me, it meant I almost lost my life. There were some close calls. Even when I was able to get past the despair, there were days I simply felt numb – going through the motions of being a mother of preteens, working, and barely surviving. It wasn’t until the crisis had passed that I was even able to share with those closest to me what I had gone through and how close I really came to the “end”. Maybe that is why this blog is so important to me and why I open it up to authors of all kinds to tell their story. In 2002, I was reading a lot of things on the Internet. Some of it saved my life.

As I began to learn to cope with everything that was happening and learned to adjust to my worsening hearing and balance, I got a lot of rest. Not even necessarily the poor type of rest that comes with depression. I did begin to slowly heal from the inside out. No (grin). My ears didn’t heal. But I did gain momentum in learning more about HOW to cope with hearing loss and balance issues. I learned to ask questions. I learned what worked for me and what did not. I surrounded myself with people who were ahead of me in the process and along side of me in the journey. Eventually I discovered I could also reach out to those who were still coming to terms themselves with hearing loss. I felt restored.

I want to close this post out with the video (captioned in both English AND Spanish) of “Every Season”. I hope you find as much wisdom in the simple song as I have. If you are experiencing winter as the result of chronic or invisible disability and illness, please write me. I handle all correspondence through this blog confidentially unless you specifically ask me to post your response for some reason. (Please email me at denise.portis@gmail.com    instead of leaving a comment as these DO become public). Despite my hearing loss I am a good listener. (SMILE) I do not claim to have all the answers, but I have a story, too, and we may share many experiences, frustrations, and successes. I hope (and even pray) that your winter is a time of restoration.

Denise Portis

© 2012 Personal Hearing Loss Journal

Why I Love Winter: Expectation

Published on by hearingelmoLeave a comment

(Part Two of Four)

I like having things to look forward to in the future. “Beats” dreadin’ it, right? It doesn’t even have to be something BIG. In fact, some of my favorite things – are “small” things. Is the song by Julie Andrews who plays, Maria, going through your head now?

Raindrops on roses and whiskers on kittens
Bright copper kettles and warm woolen mittens
Brown paper packages tied up with strings
These are a few of my favorite things

One of the many reasons I love Winter is that I love the feeling of expectation… of anticipation. You see… I know in a couple of months, the earth will awake. I love seeing frosty, ice-crystal tree buds, bright green with new life and colors peek-a-boo’ing at me all around my neighborhood. Nature holds it’s breath all Winter. As the temperatures warm and sap begins flowing in the trees, as the frost dissipates from the thawing ground to allow the first flowers to push up through the warming earth… nature exhales.

Perhaps I have a good imagination. But one thing I love about Winter is that there is a feeling of expectation, renewal, and life that builds a yearning in my heart even while the icy-cold fog greets me every morning. I know change is coming.

 

In many ways, this mirrors how I am slowly adapting to life. Life can be hard. If you haven’t learned that yet, sit down and brace yourself. It’s coming. Difficult days and trying times are a part of life. I realize I’m talkin’ like I’m as old as the hills. But at 45-years-old, I have lived enough of life to know there are hard times and good times in life.

When I’m going through a particularly tough time, I remind myself that this time will pass. Better times are ahead and I only need to persevere. Yes, I realize that there are times in our lives where it seems like “when it rains it pours… and our umbrella is broke”! You may be experiencing that kind of time. I’ve experienced them myself. Do you know what I’ve learned?

When I am experiencing a short-term, tough time, I’m able to grin and bear it and push ahead with this thing called “life”. However, sometimes it seems nothing is going right. Medical problems, personal loss, destroyed relationships, financial strain, and new challenges do NOT give us a feeling of exhilaration – rather, one of defeat. “That’s it, God!” (waves a white flag) “I give up. I’m done. Hello? Yup it is me, here! Chucking it all in… finished, quitting, stoppin’ right now. Stop the train, I’m gettin’ OFF”.

That’s when we need someone else to remind us of the days ahead. Ask for help. If you notice another who is shell-shocked by current life crisis, be their “someone”. We need someone to gently jog our memory about the coming tomorrow and the new opportunities, a “new normal” physically, and that “joy comes in the morning” (Psalm 30:5 “… weeping may endure for a night, but joy comes in the morning“). You see… this “Winter” in life is temporary. There’s an “exhale” coming!

Problems suck. We all want a problem-free life. I remind myself as I’m experiencing new (and sometimes, old) problems, that good can come from these tough times. I grow stronger, more resilient, and even more content. During this Winter there is a feeling of expectation. I can feel my very soul stir and my senses tingle as anticipation races through my veins! There is very little we are guaranteed. But friends? Spring is one them. Spring is coming!

Denise Portis

© 2012 Personal Hearing Loss Journal

Why I Love Winter

Published on by hearingelmo2 Comments
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