I Confess I Can’t Hear You…and That’s Okay

I met Shanna a couple of years ago through FaceBook. We share a passion for positive advocacy and a love for people with hearing loss. Shanna has taught me a thing or two about good advocacy towards movie theater captioning! I’m always thrilled to have her guest write for Hearing Elmo!

By Shanna Groves / LipreadingMom.com

Time to ’fess up. My ears aren’t as sensitive as they used to be.

I confess that I pretend to hear everything my kids say even when they’re calling each other “stupid” and I don’t know it.

I confess I laugh before a joke’s punch line, not because of a warped sense of humor, but because I didn’t catch the joke’s first sentence.

I confess that I am unable to hear my telephone ring without my hearing aids in.

I confess that I don’t understand most dialogue on TV without the closed captioned turned on.

I confess that I get irked when the closed captioning isn’t working is turned off.

I confess that most people I haven’t seen in years are shocked when I tell them I have to read lips to “hear” them.

I confess that my older two kids usually act as my ears in the following situations: when a person asks me a question and I don’t respond; when someone knocks softly at my door and I don’t answer it; when the phone rings and I’m not wearing my hearing aids; when my youngest child wakes from his nap upstairs and is crying at the top of his lungs; when anything in the house beeps.

I confess that I have learned to accept my limitations. I will never be successful in making a phone call without some sort of special accommodations (i.e., using a loud-volume phone or speaker phone; asking the person on the other line to repeat themselves 2-5 times).

I confess that being a hard of hearing mom is not my choice. In fact, it can make me downright cranky.

I confess that being a hard of hearing mom makes me smile sometimes, especially when my kids are squealing, whining, moaning, or acting like brats.

I confess that being a hard of hearing mom has changed me. I’m not as quick to judge others who are different than me.

I confess I’m not as impatient as I used to be. I don’t get as frustrated with having to repeat things to a store cashier, to wait in a long line, or drive in rush-hour traffic.

I confess that being a hard of hearing mom has changed me. And I like how I’ve changed.

Show Me Your Ears

Now that you know my confessions, can I ask you a favor?

Join me in my new awareness campaign Show Me Your Ears: To Promote Deaf and Hearing Loss Community Awareness.

The idea is simple:

1) Take a picture of your ears, hearing aids, and/or cochlear implants. Even if you don’t wear anything in your ears, take a picture.

2) Email your photo to Lipreading Mom at sgrovesuss (at) msn (dot) com. Include the subject line: Show Me Your Ears. Include your first name, name of your hearing aids or cochlear implant product (if applicable), and how long you have worn them.

3) Watch my blog, LipreadingMom.com, in the coming weeks. Your photo may be featured!

I have blogged extensively about my progressive hearing loss on this site and my initial reluctance to wear hearing aids or show them off to anyone. I was afraid of what people would think about them. Would they think I was unable to communicate with them? Would they ignore me?

Finally, I made a decision: I am going to embrace my hearing loss. I’m going to show my hearing aids to the world. And so I do!

Will you help me to embrace that—hearing loss or not—all ears are unique, beautiful, special?

Hard of hearing or not, I confess that showing my ears to the world has been liberating. Will you join me in this campaign?

About the Author
Shanna Groves has been a hard of hearing mom since 2001. She is the author of the novel Lip Reader and writes extensively about hearing loss issues at http://LipreadingMom.com.  

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The Road to Rescue

Hunter with service dog, Raven.

A young woman I have come to admire, Hunter Lia Zager, received her service dog from Fidos For Freedom, Inc. where I train with Chloe. Hunter has a rare and unusual disease that even leaves her doctors stumped at times. She desperately needs the funds to get her vehicle modified for accessibility. The state is helping with a big chunk, but she still needs to raise over $12,000 herself. Hunter is only 25 years old and currently relies on (often unreliable) public transportation to go to work, doctor appointments, and much more. Imagine being limited to your home many times, simply because you lack a vehicle that can carry wheelchair, service dog, etc. Minimum donations are only $1.00 and you can donate using PayPal, or debit or credit card. If you would do two things?
1) Share this need with others on your own BLOGS.
2) Consider donating – even SMALL amounts add up.

I know times are hard for many people. However, I want to help this courageous, wonderful young woman reach her goal so that she can have reliable, accessible transportation. Please help. Please share! Thank you!

TO DONATE

Hunter’s story:

My name is Hunter Lia and for the first time in never I’m asking for help. At 25 years old I am terminal, but I have never held my arms up and said I was willing to stop my fight. 5.5 years ago I became ill with a very rare neurological disease, Complex Regional Pain Syndrome (CRPS), the most excruciating disease known to modern medicine. The road has been hard, but I am so terribly blessed to have such wonderful people and a wonderful service dog in my life who have helped carry me through the toughest of times.

This disease has consumed my entire body and caused me to reach deep stage 4. CRPS didn’t stop there, it turned my body into melting pot of other diseases. It has paralyzed areas of my body such as my intestines, which are incapable of processing food (Gastroparesis), created a neuro-cardio disease, Postural Orthostatic Tachycardic Syndrome, a neuro-pulmonary disease, Respiratory Dystonia of the Chest Wall, Spinal Stenosis, and countless other conditions and diseases. It is also now believed that on top of all this, Multiple Sclerosis (MS) might be one of my latest additions. Having every aspect of your body fail you is a tremendous burden for one to carry, especially when you’re just 25. Most 25 year olds are able to go out at night, travel, make plans for the future…for me, just the thought of that takes up all my energy. I wear devices for low hearing and low vision, but outside of attempting to take my wheelchair and service dog everywhere, it’s difficult to make my life easier and manage with a disintegrating spine, excruciating pain, and countless other symptoms and challenges.

One reason I’ve struggled so much is that my vehicle is not accessible. I traded in a SUV for a minivan in the hopes I could outfit it to all my body’s needs. I never realized the costs would be over $45,000 to adapt the vehicle. I am getting state assistance, but the last 25% is my responsibility. With all the other medical expenses I’ve had to incur, I don’t have even a fraction of the money to pay the company responsible for outfitting the car. I need your help. I am trying to raise over $12,000 to make my vehicle accessible. If I could do this, I would no longer have to worry I wouldn’t be able to keep my job and health insurance due to transportation challenges, worry about not having a vehicle in an emergency, reach doctors and specialists, and really just live life to the fullest. I know this economy is difficult, but every penny will help me reach my goal. And if that’s too difficult, passing this on would mean the world to me. Thank you for taking a moment to ready my story.

TO DONATE

Another Way to Determine Your Focus

My husband Terry – someone I strive to make a priority –

Once in awhile I have to re-evaluate my priorities. A good way to discover what our focus is, would be to determine how much time we spend on various activities and tasks. If we spend a lot of time on something, chances are it is a priority for us. Priorities can be short-term or long-term. Priorities change and are influenced by circumstances and even people.

Hearing Elmo devotes “space” to posts and stories about acquired disabilities and chronic illnesses. As important as it is for me to have a place for guest writers to tell their story, I strive hard to not allow my disabilities to become my focus. That can be hard to do when your life may seem to revolve around managing symptoms and learning a “work around” in doing everyday tasks.

When Managing becomes your Focus…

There is nothing wrong with learning to manage how you do even simple household tasks with a disability. After all, chances are your symptoms may vary or you may have a progressive illness or disorder. Taking the time to safely navigate “life” is important. However, I have allowed that management to overshadow important things too.

I’ve discovered when my response defaults to “I’m sorry, I cannot go”, I may have slipped into a bad habit of allowing my disability to manage my life instead of my managing my disability. I have a friend who was recently diagnosed with MS. She was already managing a number of mobility issues with service dog, walker, cane, etc. Within the last year she has been hospitalized a number of times and no longer can drive herself. But you know what? She has learned to ask for assistance and rides when she is feeling well enough to attend things like training at Fidos For Freedom, Inc. She refuses to isolate herself and continues doing what she enjoys on days she can safely navigate her “new normal”. She is managing her mobility issues and MS with CLASS. Her MS is not managing HER.

It’s easy to allow how you FEEL or how difficult it may be for you to go places, to isolate you from the things you enjoy. It is hard for me to go places when it is rainy. Bad weather worsens the Meniere’s disease symptoms. I don’t have the choice to stay at home when it is raining if I have classes that day. If I am home on a rainy day, I don’t have the option of laying in bed holding my spinning head. Instead, I’ve learned to MANAGE.

I’ve learned that if I’m making excuses to not do something I would normally want to do, I’m letting my disability manage ME. Recently, a small group of couples that attend my church went to Hershey Park together. I cannot ride most rides at amusement parks. There was a part of me that really wanted to “beg off” going. The group was going to be gone almost 12 hours. The long day was a great way for me to make excuses and not go along. However, I knew I needed to go to something even if I had to take some time to find real “work arounds” to go. We took a car instead of riding the bus so that I could leave after 4 or 5 hours. I rode a number of rides that were easily navigated for one such as I! I had fun! And… it rained that day.

On the train at Hershey park

I spent some quality time with my husband and friends. The effort was worth it. Had I taken the easy route, I wouldn’t have gone. There is actually a lot in my life I would not do if I always chose the easy route.

You may be thinking, “You have no idea how difficult it is to live with the disabilities that *I* have to manage!”

There is a lot of truth in that. Even my husband – who lives with me – cannot completely understand all that I must do to work outside the home, run errands, do laundry, cook, clean, etc. In the twenty years I’ve had in having both hearing loss and Meniere’s disease, I’ve even learned that we can share the same diagnosis and still have completely different symptoms, triggers, and difficulties. Yet, each one of us (stop shaking your head… ) EACH one of us can manage our disabilities and still contribute to LIFE. Being purposeful is important – it makes life worthwhile. Some amazing people I know include:

– A friend with MS who coaches numerous sports teams for special needs youth and volunteers a number of hours to a local service dog organization. Even when she is tired, she drums up the energy needed to be a blessing to others.

– A friend with MS who is also a survivor of stroke who writes and encourages people DAILY – all through the use of timely emails and cards. She is a blessing to MANY.

– A trainer/friend I greatly admire who also has Meniere’s and recently went through cancer treatments as well. She gives much of her life to adults with disabilities and the dogs being trained to help them. Her community service hours add up to the 100’s – something she never takes a calculator to figure up simply because she does what she loves… helping people.

– A friend who manages fibromyalgia, CFS, and Lymes disease and still has one of THE MOST helpful owner-trained blogs about service dogs on the Internet. She is resilient and courageous.

– A friend who manages depression and an anxiety disorder who reaches out to peers who are struggling. She leads support groups and is an editor for numerous newsletters. She has made a difference to many who are new to life with these difficulties.

– Numerous friends who reach out to people searching for information and support that are new to hearing loss. Learning to live in a silent world can be overwhelming. These folks make a difference – one person at a time.

How Do I Switch Gears?

Have you re-evaluated your own priorities – things that take your TIME – and discovered your disability or chronic illness is managing YOU? One of the best articles/posts I have ever read on this topic can be found HERE. Dr. Edwards addresses  “Re-engaging Life and Finding Purpose After Disability or Illness”. The 8 characteristics he outlines about those who choose to re-engage were very helpful to me at a point I realized my disabilities were managing ME.

The International Disability Center for Resources on the Internet has another terrific article written by Dr. Brown. You can access her article HERE. Dr. Brown does a fantastic job of helping readers discover what their purpose SHOULD be based on their desires, talents, and skills. She also addresses a number of challenges that may present themselves – but also helpful ways to negotiate those challenges.

What is your focus? What are your priorities? Do you want to make some changes? I welcome your input and value your own examples of how you chose to stop letting your disability manage YOU!

Denise Portis

© 2012 Personal Hearing Loss Journal

 

Purposeful

I often put my thoughts to “paper” and write about life with an acquired disability. I rarely, however, write and ask for donations. For me to do so only means that the organization in which I hope you will choose to help is one near and dear to my heart.

Acquired disabilities took me by surprise. I didn’t stand in line somewhere and apply for them. I never filled out a registration card. The most surprising thing, however, was that I slowly and deliberately isolated myself from life. It was a sneaky process.

I saw a DEMO from Fidos For Freedom, Inc., in 2005 at my teenager’s 4-H club. It was there I first saw an assistance dog in action – one that was not a seeing eye dog. I looked into the organization and soon started the process to enter training. I became a part of an incredible organization. After a little over a year, I graduated with my own canine partner. I then enrolled in school to finish my graduate degree. I applied for a job and was hired to teach in a local community college. I once again felt purposeful.

You see… Chloe does more for me than alert me to the sounds I do not hear. She does more than retrieve items I drop and cannot reach without toppling over. Bracing so I can safely stand or counter-balancing on the stairs is only part of what she does. Chloe gave me confidence and courage to embrace the idea that I could once again be purposeful.

Sunday, September 30th, Chloe and I will be participating and walking in Fidos For Freedom’s 2012 Stroll ‘n Roll event. I know that times are tough for many individuals and families. However, even small donations add up to a big difference in the life of this wonderful organization. Your donation goes towards the programs and training of these wonderful service dog teams. Fidos also has over 200 annual visits by trained and tested therapy dog teams that go into hospitals like Bethesda Naval Hospital, nursing homes, respite care, schools to assist struggling readers, and much more! Fidos For Freedom is a 501(c) (3) organization so all donations are tax deductible.

Will you consider helping in this worthy fund-raising event? Your donation goes to help another person with disability – be purposeful. It is hard to put a value amount on the confidence, peace of mind, and purpose these wonderful trained service dogs give to their human partner. Your donation makes you a part of that happening in the life of another. I hope you will consider giving! I thank you in advance for your consideration in helping me reach my goal and in helping this wonderful organization. Chloe sends tail wags and doggie kisses.

Information about the event: Click here

How to donate online through PayPal: Click on link above, scroll down to “How to Get Involved” and click “Donate”.

Want to make a donation by check? Email me at denise.portis@gmail.com and I will mail you a stamped, self-addressed envelope to do that easily! Please make checks payable to Fidos For Freedom, Inc.

Denise Portis

© 2012 Personal Hearing Loss Journal

Invisible Illness Awareness Week

This week marks a very special week for me. I have been a part of Invisible Illness Awareness week for a number of years now. Sept. 10-16 is Invisible Illness Awareness Week.

There are a number of terrific speakers at this year’s virtual conference. You can check out the schedule here:  CLICK

Hearing loss and Meniere’s disease are both invisible. I have struggled both successfully and unsuccessfully through the years in living with these. Those who do so live with a fair amount of frustration and stresses simply because what they deal with IS INVISIBLE. For me, one of the most frustrating things is that my symptoms may vary. To some, this makes me lack credibility at times. For example, I “hear again” with a cochlear implant and BTE hearing aid. I may hear you just fine in a quiet environment and one-on-one. However, if my tinnitus is roaring or we are in a noisy environment, my primary response may be “Huh?“.

I walk, jog, and can even RUN (believe it or not) on sunny days. However, the weather is a real trigger for my own Meniere’s disease. I may be out-walking my assistance dog one day, and the next have her close and wobble like an intoxicated person. For those who do not understand that symptoms may vary, and may fluctuate, it may seem as if I can’t make up my mind as to whether or not I live with a disability.

I have friends who have Fibromyalgia, Lymes, Multiple sclerosis, chronic fatigue syndrome, and other various illness and disabilities. They will tell you that it can be frustrating, even emotionally debilitating, to have folks in their lives choose to scorn, disbelieve, or ignore their own invisible illnesses.

It takes courageous people to live with invisible illness. I hope you will go to IIA (CLICK HERE) and learn more about how you can get involved in helping to raise awareness in your own community. You may not live with invisible illness yourself, but all of us who live with it will tell you that our friends and family that support us are just as influential as we are ourselves – if not more so!

Denise Portis

© 2012 Personal Hearing Loss Journal

Note to Self: :-)

Sometimes I have to actually remind myself to smile. Don’t get me wrong! I have plenty to smile about! I have healthy kids who just happen to be great human beings. I’m married to the love of my life (26 years!). In spite of hearing loss and Meniere’s disease I have what I feel like is a good “game plan”. I have coping skills that work – most of the time. But you know something? I still forget to smile.

Why I Forget…

1. I get too busy

I stay busy to give myself a sense of purpose. A bored Denise, one with too much time on my hands, is a depressed Denise. It’s not that I don’t take the necessary time to decompress, meditate, and think deeply. I do! But there is a “fine line” between taking time to do these things and having too much time to do these things.

Staying busy helps me to feel purposeful and even necessary. I hope to one day get to the point where I can be less busy and still feel purposeful. But heck… even my favorite scripture verses and quotes are ones about being productive and busy! However, I can get SO busy, I forget to actually enjoy the things I am doing. I forget to smile. Happiness is often a CHOICE, but if I get too busy I may forget to make that choice.

2. I’m hanging out with negative people

Sometimes it cannot be helped. You may work with negative people. Geesh. You may LIVE with negative people. It takes a special kind of person for that not to rub off on you eventually. Ever walk into a room extremely content and happy with life and run into a sour puss? Negative vibes may just ooze out of their pores. And darn, but if they didn’t set their sights on you and pin you down to complain. I’ve left the company of folks feeling shell-shocked. It can be hard to be with these people, yet I also believe that I need to take opportunities to minister to them if I can. It may be just listening. It may be that I can let them know I’ll pray for them. Yet, I certainly do not seek these people out to deliberately spend time with them.

Back when letters were still written (instead of email or FaceBook messages), I remember cringing when I would get a letter from a “certain someone”. Their news was never good news. Talk about a wet blanket. It was hard to plow through all the negative lines penned by this very sad person, but I also felt compassion for them as I knew it had to be a hard way to live.

The thing about negativity though is that it is very contagious. It matters not if you’ve recently been vaccinated. Few of us have the antibodies to fight off this contagious infection if we have to be with folks like this. I really do try to limit what time I spend with people like this. It can be hard if you must see them often though. I have a friend who is married to a negative soul. She loves him. But with premeditation, she must find time away from him during the week to spend time with people who are not like he is. He has become “less” negative through the years, but I doubt he’ll ever change completely. To combat being drug down into the same pity parties, she has to find people to insulate her to negative thinking. It works for her.

Why It Can be Hard to Smile, but Necessary

One of my good friends has fibromyalgia. Frankly, it is really difficult for her to smile on days her body is in a full “fibro flare”. She does some things to help during these times as she doesn’t want to go throughout the day ROARING at everyone. She loves eating a Wendy’s Frosty and she only has one when she is having a bad pain day. She has “feel good” music that she listens to in the car if she has to go out. She has a stack of favorite books that she only reads when she has to curl up into a ball of pain and “deal with it”. She has cats and claims they are therapeutic. She has a short list of people she will call when she is sobbing and needs a smile. She has a plan. She knows how important it is to smile through the pain (her words, not mine).

Earlier I said that happiness is a choice. This is actually the title of one of my favorite books by Minirth & Meier. Joy is different than happiness. I believe that joy is a heart emotion. We can be sad at the graveside of a loved one, with tears raining down our faces, yet feel joy. Joy for the life they lived and memories you have with them.  A person can have joy and have just lost their job, their boyfriend, or their goldfish. But happiness? Happiness is a choice. Sometimes we have to choose to be happy EVEN WHEN IT DOESN’T MAKE SENSE.

This doesn’t mean it is fake. A deliberate choice to smile and be happy is simply a proactive way to entice our thinker to change our feeler. It’s not magic. It’s not a secret formula. Nope! I am not saying that we should never belly-ache, cry, scream, or throw things. (Well, perhaps the last we can let go of forever, hmmm?)

Most folks are about as happy as they make up their minds to be.
    Abraham Lincoln
    16th president of US (1809 – 1865)

I don’t know your story. I do not walk in your shoes. I do know that my own shoes are not always comfortable. They can leave blisters. We can get in a habit of thinking negatively and in frowning. I know I have done this myself. I may have to leave myself notes or messages to “smile more”.

I don’t always do this perfectly. Sometimes invisible illness and disability wipe out my happiness savings account. At various times, I have had to seek counseling to really get back on track. Perhaps I’ve let myself go to long without smiling? There’s no shame in having to receive help in remembering HOW and WHY to smile.

Smiling may be like the Red Cross to a person in need. Smiling may make someone’s day. Someone may be having a bigger poopy day than you are. Even my dogs respond to a smile with a tail wag. Frankly? I like to see other folk’s tails wag. Smiling sends a message – a positive one. Maybe I’ve taken too many classes on Cognitive Psychology, but I truly believe how we think can change how we feel. So I believe we have to really work on thinking positively. I try to make my face match my self talk. Smile, Denise… smile! Make it a habit and you may eventually feel the corners of your heart tug up in an answering grin as well.

I’ll leave you with an oldie – but one I think says a great deal about why we should smile. You may even need to make a note to “self”.

Denise Portis

© 2012 Personal Hearing Loss Journal