Category: Challenge

Decisions, Decisions…

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For a totally unrelated reason, I was reminded this week that my husband cannot swim. I hate it when a discussion brings up old nightmares about the topic too! Goes to show how much our subconscious is at work… especially when sleeping. Anyway, this conversation about the fact that my husband cannot swim had me dreaming about one of the most terrifying events that led up to my banning him from going into the ocean.

The year was 2001, and my family and I were in Siesta Key, Florida. Terry was taking some classes to finish up his doctorate. Always nice when degree completion requires on-site classes in Sarasota, and you can time it where the whole family can be dragged down with you! Terry wasn’t getting much rest and relaxation. Going to class all day and putting the finishing touches on his dissertation were exhausting. At night he was glad to just catch whatever sunshine was left in the day and rest on the beach while I corralled the kids into a distance I could easily manage their activities.

I’m not sure what prompted a non-swimmer without a life vest to decide to get on an inner tube, launch one’s self into the ocean, and drift off to sleep. He swears up and down he had no idea he’d drift out to sea. After all, when he got past the breakers and could just snooze, the ocean was calm and serene. I’m the one with hearing loss (a fact I’ve made plain on this blog). But exhaustion and FREAKIN’ DISTANCE FROM SHORE will dissipate sound waves and keep someone from hearing shouted warnings; even from hearing ear-drum piercing screamed warnings. That’s right. Picture me on shore with kids, jumping up and down, screaming warnings that a riptide had caught him and he was oblivious to the danger. I remember thinking, “he has the room key around his wrist so I can’t even get into our condo and have one of the kids call my parents to let them know Terry drowned”. Morbid, yes? But I knew Terry could not swim AT ALL. The man cannot even dog paddle (something Chloe has told me since that she’s a little embarrassed about actually).

We may not have been able to attract Terry’s attention, but we did other folk’s. Soon a small crowd of people were whistling and hollering for “Terry!” A man, likely a native, stopped close to me and said something. I could hear the rumble and pitch of his voice. I stopped screaming long enough to sputter, “I have a hearing loss and have to see your face to hear”. So he touched my shoulder to get my attention and said, “He can’t swim? Want me to go after him?” I looked out at my still sleeping husband and agreed immediately. “YES PLEASE!!!!” (At least I’m polite...)

So the man went after my husband. He must have been shouting as he swam, because when he got closer to Terry, I could barely make out that Terry finally woke up. I saw a flail of hands, legs, and arms and prayed he’d hold on to that inner tube! The rescuer had started further up the beach to Terry and I think the tide and his strokes eventually got him safely to Terry’s side. He must have given him instructions to kick, which he did as well along with some steering, and eventually ended up on shore about a mile from where we all started. The small crowd of people had followed the kids and I down the beach. Some kind soul had picked up our things and carried them with us, knowing I wasn’t cognizant enough to even do that.

Drifting Off

A very popular topic for writers who discuss acquired disabilities and chronic illness, is social isolation. Isolation does not happen all at once. It is a gradual process; a series of small decisions and choices that eventually yield a self-perpetuated aloneness. We become “deaf” to the shouted (and well-meaning) warnings of people around us. Can we be rescued? Will we even allow a “strong swimmer” to intervene?

For people with hearing loss, isolation is almost a part of the process of learning to live with it. I know few people who are late-deafened that did not have at least a short period of self-imposed isolation. Why? Well experts have said of the late-deafened, “They no longer felt they belonged in the hearing world, and neither did they belong in the prelingually deaf world. Onset of deafness had left them in a twilight zone between worlds and had robbed them of their identity” (Barlow, Turner, Hammond, & Gailey, 2007, p. 442). Other acquired disabilities can produce the same isolation, however.

Physical difficulties can prevent people with a mobility impairment from creating social networks. Even the weather can keep some folks with mobility issues away from others. If you have a power wheelchair or scooter, you do not want to go out in the pouring rain or blistering heat. Despite the intentions of the ADA, not all places where friends get together are accessible. Whether you are born with some limitations, or acquired them later in life, disabilities or chronic illness may result in feelings of loneliness and isolation, and a lack of access to support information (Matt & Butterfield, 2006).

Not As It Seems

Not all decisions to RSVP to invitations with a “No, thank you” are because of isolation, however. Friends and relatives need to understand and trust that sometimes? Those “no’s” are not a pity party nor decision to pull back. I don’t go to pool parties. I have technology that cannot get wet and a husband who cannot be in the heat because of having one kidney. (And have you picked up yet that THE MAN CAN’T SWIM?) Sometimes there are very legitimate reasons for declining an invitation. A person may not be able to do evening gatherings because they have legitimate needs for an early night. Folks with disabilities and chronic illnesses often require more sleep than the average adult. It is not always possible to nap the afternoon before in order to go to some evening “shin dig”. Some people have to offer late apologies to activities they had planned to go to… but they have a “flare” when it comes time to prepare for an outing of fun and fellowship. The weather gets the final say for some of us. I can agree to go to a “Girl’s Night Out” a week in advance, only to have a weather system move in to where I can barely move in an upright position.

But…

I have also fudged about going to things I really could have had I really wanted to attend. Sometimes we say “no” because that is

EASIER or

HABIT.

We have to learn to police ourselves and ask ourselves some legitimate questions when our first impulse is to decline an invitation.

Social Networks

Nothing gets on this female’s nerves more than when I hear someone ‘pooh-pooh’ social networks like FaceBook, My Space, Blog networks, online support groups, and message boards and forums. I have heard holier-than-thou folks spout that these avenues “aren’t real people” and therefore are not “real relationships”. Drs. Patricia Obst and Jana Stafurik refute this much better than I can. “Online we are all able-bodied“. Online there is a “psychological sense of community and social support found through membership of disability-specific websites” (Obst & Stafurik, 2010, p. 525). These researchers looked at 160 different individuals who had various disabilities or chronic illnesses. “Results indicated that users did receive moral support and personal advice through participating in such online communities. Further, results indicated that online social support and feeling a sense of community online were positively associated with participants’ well-being in the areas of personal relations and personal growth” (Obst & Stafurik, 2010, p. 526).

I am always thrilled to have guest writers here on Hearing Elmo. (Interested? Email me at denise.portis@gmail.com). This forum has provided information and support to individuals “living it” and to family members and friends for information. I have been invited to write in other forums and welcome the opportunity. Ever heard the phrase, “dissemination of information”? The Internet makes us equal. It provides an easy, inexpensive way to find support, learn, advocate, and connect.

It can also serve as an avenue in which a warning comes through loud and clear… even to those of us who are late-deafened.

Are you avoiding outside activities?

Are the reasons you are doing so legitimate?

Are you connecting with others?

Are our decisions prompted by necessity or the result of anxiety, depression, and an attitude of giving up? These are important questions to ask ourselves. Please don’t find yourself adrift on an ocean with the shore out of reach. Ask for help. Discover a hero swimmer on their way to rescue you.

Denise Portis

© 2012 Personal Hearing Loss Journal

Barlow, J., Turner, A., Hammond, C., & Gailey, L. (2007). Living with late deafness: insight from between worlds. International Journal Of Audiology, 46(8), 442-448.

Matt, S. B., & Butterfield, P. (2006). Changing the disability climate: Promoting tolerance in the workplace. American Association of Occupational Health Nurse, 54, 129–134.

Obst, P., & Stafurik, J. (2010). Online we are all able bodied: Online psychological sense of community and social support found through membership of disability-specific websites promotes well-being for people living with a physical disability. Journal Of Community & Applied Social Psychology, 20(6), 525-531. doi:10.1002/casp.1067

How Important is it to Prepare?

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With family in Colorado dealing with the fires, and our own area’s recent experience with widespread power outages after a “land hurricane”, disaster preparedness has been on my mind lately.

Isn’t it crazy that we don’t think to plan for something until it actually happens? Then we get some things together for the next time, only for a decade to go by before it repeats itself. By that time batteries are dead, water is stale and evaporated, and extra dog food has turned to powder.

Preparing can be expensive too; something most of us have difficulty budgeting for should a disaster occur. Yet, little by little we CAN get together some essentials. Purchased over time, these items may be less of a punch to our weekly budget for food and other essentials. If you dislike gathering things together for a price, disaster preparedness kits can be purchased at stores or online.

What to Put in a “Kit”

You can find numerous resources online with information about what to put in a disaster preparedness kit. You may have to prepare with numerous people in mind, or even numerous pets. According to the experts it is best to have a kit on hand that can be picked up and taken with you in the event of an emergency – fire, hurricane, or flooding… things that can be predicted to some degree as the result of early warning systems in the area.

With power outages, however, you may need a bigger “kit” for numerous days. Power outages can be planned as the result of city construction or tree removal. Most of the time though? Power outages are an unpleasant surprise. Causes can range from results of mother nature at work, or a hubby at work with a shovel and a poor attention span.

72Hours.org has some terrific ideas in what to put in a disaster kit. You can access the site HERE. FEMA and Ready.Gov has some additional plans and ideas at their site. These include how to let friends and loved ones know where you are and how you are doing. You can access these plans HERE. The ASPCA has some wonderful ideas and plans for those of us who may have service animals and other family pets. You can access that information HERE.  The Red Cross has some additional ideas for pet owners HERE.

The key is to BE PREPARED. When my family and I experienced 36 hours of no power in 95 degree heat, it isn’t something we decided to do for FUN. It was an unexpected and unpleasant surprise. We had plenty of water and gas in our cars, but could not even leave the house at night in sweltering heat because of numerous pets that needed attention, supervision, and assurance. We holed up in the basement and did our best to keep everyone calm and as cool as possible. Because I shop at Costco, when I buy batteries, I buy A LOT. But I wasn’t keeping close tabs on what sizes we had, and our flashlights and lanterns were scattered all over the place. (The power outage began late at night after the sun had gone down). I discovered after doing a little investigating after the power returned, that generators are expensive. They can also be dangerous to operate if you do not know what you are doing. Yet after our experience, I started a “generator piggy bank”. It may take us YEARS to have enough to actually buy one, but imagine being able to run some fans and keep the refrigerator running during a long-term power outage?

I welcome additional ideas our websites that may help folks prepare.

Disabilities or Health Issues?

As a person with disabilities I was prepared BY ACCIDENT. I purchase cochlear implant batteries in bulk once or twice a year. Thankfully, my cochlear implant is NOT the type that uses rechargeable batteries or I may have been deaf as well as sweaty! I noticed that because of the excessive heat, my balance was worse than usual. I was unprepared for a SUNNY day to be staggering around as if it were a rainy, overcast day. My husband who only has one kidney, was especially fatigued and weak because of the heat. I had friends that were unable to power their scooters that they use for mobility purposes, but their manual wheelchairs were in storage! These kinds of things can make a difficult situation much worse.

If you have special needs of ANY kind, be sure to take these into consideration when you do your planning. Because we are all aware of how important that planning is, right? (GRIN)

Denise Portis

© 2012 Personal Hearing Loss Journal

Attracting More Flies

Published on by hearingelmo1 Comment
Photo by Deborah Marcus, February 22, 2012, North Carolina

I just purchased a book through Amazon, Benjamin Franklin’s “Poor Richard’s Almanack”. I’ve always enjoyed books like these and have seen a number of quotes from this book over the years.

One American proverb from this book that many people have heard has to do with honey.

and vinegar.

and flies.

 Benjamin Franklin, “Tart words make no friends; a spoonful of honey will catch more flies than a gallon of vinegar” (Franklin, 1980).

When I first heard this quote I remember thinking, “Well who in the heck wants to attract FLIES”? Having grown up on a farm in SE Colorado, I can tell you that flies were a problem. The animals hated them, farmers hated them, and children relegated to policing the house with fly swatter and tissue in hand hated them!

However, like many quotes, you have to look past the surface to get at the true meaning. Gee, had I known vinegar would have kept them away I may have started sprinkling it around and dabbing it behind my ears.

Ok. Maybe not.

We don’t need to go raid our friend’s hives for honey, either. This quote has to do with being tactful – on purpose.

You know what I’ve discovered? To be tactful, I DO have to be purposeful about it. It is super simple to be tactless. Especially when angry! I’ve learned that if I’m to be tactful, thereby attracting more attention with my “honey”, I have to set out with very real purpose ahead of time. It seems we were created to have a lot of excess vinegar on hand.

Tart Words

I think a lot of folks do not realize that the quote begins with, “Tart words make no friends”. Last week I received a lot of private responses about the post “A Special Kind of Stupid“. Some things people with disabilities shared with me made me very upset. You just would not believe some of the things that “normal” people say to folks with invisible illnesses or disabilities. Then again, if you follow “Hearing Elmo”, perhaps you would believe it as you likely have some connection to the disability or chronic illness communities.

Though it may be difficult, we really have to remember to put a cap on our – erm – vinegar when responding to some of the stupid things we hear in our day-to-day lives.

No, She Is Really Unhappy

Take an example from last week in “A Day in the Life with a Service Dog”. At Walmart, as per my usual mid-week major errand, Chloe and I ended up attracting some attention. As I outlined in an article for Gale Hannan at “Hearing Health Mattters“, if you don’t like attention then do not mitigate your disability with an assistance dog. You are going to attract attention. It becomes easy to ignore and if you are deaf like I am, you don’t even hear all the exclamations of surprise. However, sometimes I’m stopped. Dog-lovers like Walmart… or so it would seem. Most of the time I am very glad to stop and answer questions. I carry information about hearing dogs and balance-assist dogs with me for opportunities just like these. I’ve discovered, however, that if I stand around TOO LONG, folks begin to unplug their brains before asking questions. There is this “fine line” of how much time is “long enough”, prompting me to move on with my shopping. I evidently have not discovered that important timeframe yet. As I answered this lady’s reasonable questions, a lull occured in our conversation. That should have waved the red flags for me. Heck I’d take explosions in my underclothes if I could learn to pick up these cues.

But nope.

I stuck around too long.

“So does your beautiful service dog ever get to just be a dog? Does she ever get to play?”

Vinegar began pooling under my tongue. Chalk it up to living with a house full of very sarcastic people. I wanted to say, “You know? As a service dog she needs to earn her keep. The vest comes off at night and she is allowed to finally rest. She’s a working dog – not a playing dog. It wouldn’t do me any good for her to go around thinking she could ever play, right?” (said with saccharin sweetness).

Tactful Responses Ultimately Educate

Instead I swallowed the vinegar (grimace) and plastered on my best “WHAT A TERRIFIC QUESTION” face and replied, “Well she is a dog! She is a beloved member of our family. She gets play breaks at work and doesn’t actually wear her vest at home. She still does alerts and helps while at home, but she is off duty more than she is “on”. A healthy service dog is allowed to just be a dog. That is why she loves working for me. I set very realistic boundaries and expectations”.

Being tactful and pleasant is important if I’m to hope that I play even some small part in helping to educate others about hearing loss, balance disorders, and service dogs. If I’m angry and belligerent, I’m not going to “win friends nor influence people”.

And neither will you.

However…

Is It Ever OK to “Let ‘er Rip”?

I have lived with hearing loss and balance issues more than half of my life now. That means I have some experience. That does not mean that I do everything right. Folks ask me from time to time when it is OK to put others in their place.

We can’t exactly take out a megaphone and announce to everyone within earshot, “This person just said something STUPID”.

To demean others is never the right way to go. For one thing, it only makes US look bad. You certainly won’t promote education, compassion, or understanding in others if you deliberately embarrass or fuss at them. Having said that, I do believe that there are times that responding with sweetness and “honey” may not be the right answer. After all, it may be that you no longer WANT to attract that particular person who simply cannot and WILL not treat you like a normal human being. I believe the right time to load your water pistol with vinegar occurs when:

1. You’ve responded the right way over, and OVER again.

Maybe it is a family member that thinks their comments are funny. Maybe it is a co-worker whose remarks border on the unkind. At some point you may discover that the only way to educate someone is to be a little more FRANK – pardon the pun Benjamin Franklin!

Tired of the eye rolls and deliberate condescending response at a dinner table of “I’ll tell you later” after asking for a second repeat of what someone said? Perhaps it is time you gently laid your hand on their arm and said in a normal tone (for they likely do NOT have a hearing loss), “You know? It hurts my feelings when you say that and sigh and roll your eyes. I only want to hear what you said. You never actually remember to tell me later what it was. Don’t blow me off. What was funny? I want to participate in your life. I care about these moments and we will never re-live them or have them as “do overs”. I want to know what you said because I love you”. Others at the table may have grown quiet at this calm announcement. But that can work in your favor too. Sometimes educating others occurs by observing someone else getting educated. You may have let a little vinegar taint what you said. A little “sting” may be necessary to get through to calloused hearts.

2. You respond in defense of others.

Sometimes you may need to put up the honey aside and gear up with vinegar in order to stick up for someone else. I’m much quicker to speak up to a bully when the person being picked on is NOT ME. This has to be done carefully, however, as you do not want to take away an opportunity for someone else to stand up for themselves. When you live with disability, chronic illness, or invisible differences, you need to learn to be as independent as you can. It is healthy. You may need assistance in technology, puppy power, or by swallowing your pride and learning to ask for help.

However, there are times I believe, that we should step up and even figuratively lock arms with another who is being misunderstood to let them know they are not alone, and let a bully know they are being irrational – or STUPID.

We Won’t Always Do it Right

I can be a sour puss. Vinegar is more likely to run through my veins than honey. I’m allergic to bee stings.

Sometimes I blow it. I respond as if I don’t care if someone better understands disability and hearing loss. As a person of faith, I know this dishonors not only me, but also God. I have learned to say “I’m sorry” – and really mean it. Acknowledging that you aren’t feeling well today and mis-spoke or are feeling belligerent and should have kept your mouth shut shows maturity. Did you blow it? Well make it right. You know what to do.

Franklin, B. (2007). “Poor Richard’s Almanack”. Skyhorse Publishing, Inc. New York : New York, p. 44.

Denise Portis

© 2012 Personal Hearing Loss Journal

A Special Kind of “Stupid”

Published on by hearingelmo7 Comments

 

On Monday evening, May 14th, David Walters of Bel Air, MD, pulled a fire alarm in  a crowded theater. He was issued a criminal summons the following day and faces a $5,000 fine and up to 5 years in jail. You can read about the story HERE. More on the story HERE.

It seems David was upset that the movie was open captioned for patrons who are deaf or hard-of-hearing. Specific movies (identified at the ticketing counter) allow people with hearing loss to enjoy newly released movies on the big screen. It allows equal access. Sure… we can purchase the movie later after it goes to DVD and watch it at home. But who wants to miss out on the buttery popcorn, movie candy, cherry Icee‘s and being with friends and family at the theater? Nothing beats the big screen! David marches out and complains – evidently loudly. He is offered a refund which he refuses. He goes back in to finish the movie. When finished he comes out again and loudly complains – now demanding a refund. When denied (because he went back into the movie), he gets angry and pulls the fire alarm. This shuts down all the theater’s screens and panics movie goers.

This is a special kind of S.T.U.P.I.D. When I first read about this story, I have to admit. I had some “AVENGER” feelings going on in my own heart and mind for this idiot. I thought, “Wow. If he could live one day in my shoes. It would be poetic justice for him to lose his hearing someday!”

Deaf For A Day

Because I live with both deafness and a balance disorder, I can tell you honestly that really? I wouldn’t wish deafness on anyone. Yeah. This jerk probably deserves it, but hopefully what he’ll get is justice. I hope because he endangered so many people that they make an example of him. I hope everything was done correctly in his arrest so that he doesn’t get off on some kind of technicality.

Each year I ask my students in my ASL1 class to voluntarily participate in a “Deaf For a Day” assignment. Later, they write about it. Most “get it”. They understand what the assignment was about and why they are asked to participate. Each year, however, I have either a student or two, or a parent or two, very disgruntled about the assignment. In the follow-up writing assignment, some disclose how poor of attitudes family members had because they were unable to communicate with their student in a “normal” way.

Yes.

I like to think that should something happen to their child and they lost their hearing, these parents would do all that they could do to be supportive and loving in the transition to a new way of communicating. They may not use ASL even, but technology is not a 100% fix. Even cochlear implant surgery is not 100%. I’m bi-modal (both cochlear implant and hearing aid) and although I hear really well, I still am considered a person with hearing loss. There are times I have to ask for a repeat, or ask someone to follow me to a quieter location.

Put Yourself in Their Shoes

Before you think to yourself that you would never be this “special kind of stupid”, consider this.

Have you ever parked in a handicapped space to save time because you were only running into the Post Office for 5 minutes?

Have you ever sat at a table clearly marked for handicapped patrons at a local fast food place because there were no free tables, and then failed to keep a look-out for anyone coming into the establishment that may need that table?

Have you ever reached to pet a service dog without requesting permission of it’s owner?

Ever felt exasperated (and let it show) while waiting in line behind a mom with a child with autism or other special needs who was having a meltdown?

Have you ever felt impatient as someone with mobility issues that fumbles and drops items while you are waiting in line at the cashier?

Ever see someone stumble or walk funny and immediately think they’ve been drinking instead of thinking they may have a balance disorder?

Ever honked your horn and grimaced at an elderly driver who cautiously entered a very busy intersection during peak rush hour?

Not understanding what chronic fatigue syndrome, fibromyalgia, or Lyme disease actually are, have you inwardly cringed and rolled your eyes while listening to a seemingly endless list of complaints about pain from a co-worker, fellow church member, or acquaintance?

Ever see someone mistreating a homeless person or person with mental illness and not intervened?

Ever stepped into a handicapped stall in a public restroom because the others were full? Exactly how are you going to know someone is there who needs it when you are actually in there doing “business”?

You may not be pulling fire alarms and endangering hundreds of people, but you are still choosing to be a part of this special kind of stupid group. I’ll admit that I’ve made some of these mistakes myself. We all have.

I’m asking that all of us take a minute, however, to think about how we can do better. I don’t know about you, but I don’t want to be a special kind of stupid.

Ever.

Let’s love our fellow man, offer a helping hand when we can, and smile at someone just because it’s Monday. Buy a cup of coffee for the next person in line. Hold the door for someone.

Maybe.

Just maybe…

it will be contagious.

Denise Portis

© 2012 Personal Hearing Loss Journal

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.

 

 

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

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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

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

Why I Love Winter – Restoration

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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

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(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