We Can’t Know What it Means

Entry Photo for Cara Gregg - Columbia, MD

When I want to go to the store, I load up my service dog and away I go. When I go to church, I just walk out the door to my townhome’s parking place and get in my old car and drive safely to the place I call my church home. Whenever I need to go somewhere, I have a reliable way to get there. My orange, small Caliber is old with lots of miles on it, but it runs and it is reliable. I am grateful for that.

A good friend of mine, Cara, does not have reliable transportation. She cannot get in my Caliber. You see Cara not only has a service dog, (and Tank is a handsome, helpful boy), she is also in a scooter. She has an old accessible van with over 150,000 miles on it but the lift no longer works on it. She is currently in a contest with many other wonderful people, with the National Mobility Awareness Month. An accessible van will be given to the registered participant with the most votes… and you can vote DAILY.

Because there are so many people in the contest who are worthy – I’m quite sure – I wanted to let you know why I think Cara deserves to win. After reading my story, I hope you will vote (a simple process), and do so daily. I hope you will encourage others to vote, and share the link through email, FaceBook, Twitter, etc.

Cara is a person with disabilities but is in no way disabled. She has MS and Interstitial Lung Fibrosis. She recently lost her special needs son, Justin to an undiagnosed heart condition. Cara is now on permanent disability. But… Cara volunteers more than most able-bodied people. She is a coach of a special Olympics team. She does the Polar Bear Plunge for Special Olympics. She volunteers for Fidos For Freedom, Inc., and is an unpaid staff person. She mentors new people to the service dog organization. Cara works hard. She just doesn’t get paid. She does, however, receive a lot of joy and finds a sense of purpose in what she does. Cara has people who need her. People who count on her.

Cara only wants reliable transportation. She requests your vote. I request your vote on her behalf! There is no one more worthy. Let’s help her continue to be able to volunteer and serve in her community. Let’s help her not have to worry about how she will get to the grocery story, doctor’s offices, or pharmacy. I hope you will help. A one time registration takes less than two minutes. Then it takes 30 seconds a day to vote. Hate junk mail? Me too! Be sure to click the box “OFF” for being willing to receive emails from the organization. I don’t blame you! I do it every day myself as I don’t need more email in my Inbox.

This will mean so much to Cara if she wins. Can you do your part? 30 seconds a day? Please read her very special story at this link:

CLICK HERE

Will you share her story with others? The contest ends soon! Thank you in advance!

Denise Portis

Make a Difference

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make a difference

My paternal grandmother passed away unexpectedly on March 28th. She was instrumental in my becoming, well – ME. I told her the FIRST time how important she was to me at Silver State Youth Camp in the Rocky Mountains when I was 13-years-old. I made it a point to tell her at least once a year, and to my knowledge never missed a year of telling her how important she was to me.

We have people we care about, and then there are usually a smaller group of people who influenced who you are. I’m convinced we do not have a whole lot of opportunities in life to invest ourselves THAT WAY in the life of another.

Searching for Significance

One of my favorite books is by Robert McGee. Searching for Significance is something all of us long for I believe. Something it took me years to learn, however, is that “significant” is what you deem important. What I think is significant and life-changing, may not mean a hill of beans to you. And that’s OK. We can’t find significance by asking others how they measure that. Significant things are as unique as people are. This is why so many of us are invested in causes, hobbies, and community service. For US, these things add significance to our lives. We want to make a difference by being involved.

One of my favorite quotes is by Joseph Campbell. “Life has no meaning. Each of us has meaning and we bring it to life. It is a waste to be asking the question when you are the answer.”  I find this rather profound. WE bring meaning TO life.

Life is hard. Living with disabilities is hard. Living with adult children at home is hard (not really but I had to throw that in there). If I expect my life – with all it’s trials and successes, joys and sorrows, to provide meaning, I’ve missed the whole point of living.

Some folks think they are not in a position to make a difference. You don’t have to have money or advanced degrees to make a difference. Everyone has some kind of talent. I have friends whose disabilities are severe enough they are really home-bound. Yet they have made such a difference in my life through the short emails or messages they send me – right when I need encouragement the most. I have had people I don’t even know make a difference.

I will never forget the homeless man I met at the inner harbor in Baltimore. My “quick diagnosis” was schizophrenia. He was a beggar, entertainer, and to many a nuisance. He stopped me to ask about my service dog. He asked if he could have her and promised to take good care of her. When I explained what she does for me I actually got choked up. He listened attentively and then squatted down and held her head for a moment. He muttered something to her and I couldn’t make it out. (It hadn’t registered with him that I said I was late-deafened). He looked up and said a little louder, “I was jus’ tellin’ her to be the best dog for you she could be because life is short. She makes a difference so she has to count now, not tomorrow”. I was like, “Woah.” That has stuck to me like super glue for 6 years now. It has inspired me to make a difference TODAY. We aren’t promised tomorrow to make a difference. Count now.

Just Remember to TELL THEM

If someone else does something that makes a difference to you, won’t you tell them so? It doesn’t have to be a huge announcement. It doesn’t have to be a flamboyant gesture. No need for helium balloons and streamers. Just tell them, “You made a difference”.

My grandparents... together again.

My grandparents… together again.

We need to let others know when they influence us or inspire us. Who am I because of my grandmother? Those who knew us both tell me I get my stubbornness from her. They also tell me my love of dogs, singing voice, hair color, and ability to confront people with courage all come from her. The reality is that even when my life began to change as the result of Meniere’s disease and deafness, her letters made a difference. She is a writer, and encourager, a cheerleader, an advocate, a teacher, and a legacy-builder. When she wrote, a common theme included near constant reminders that *I* could still make a difference. She encouraged me to be an advocate.

I am.

She encouraged me to write.

I do.

She told me I should not be afraid to speak and present to others.

I’m not and I do.

Her legacy of “making a difference” spans generations.

Very likely I do not know you personally. However, I do know that you *POINTS THROUGH YOUR COMPUTER SCREEN* can make a difference. It doesn’t have to be big. Betcha it is big to someone else though! That is what making a difference is all about.

Denise Portis

© 2014 Personal Hearing Loss Journal

Your Thinker and the Trickle Down Effect

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Wednesday, March 19th

I had a “pep in my step”. I had a whistle on my lips. My heart was glad. I was walking my service dog and most of the snow was gone from the ground.

“What beautiful weather for a walk!” I thought to myself.

But then a squirrel scampered down off a tree trunk merely inches in front of my well-trained service dog’s nose. It all happened so fast.

The first jerk on the leash put my body in motion. You can’t fight the laws of science. I was going to be in motion until something stopped my motion since my brain went on instant vacay. Let me tell you I stuck the landing. Nearby Olympic judges all held up “10″ placards. Cheers all around (or at least in my imagination).

I lay there on the pine-needle strewn ground for a minute trying to determine if anything was broken. The world was still spinning. I closed my eyes for a minute and choked back the nausea. Flipping to my back I felt a hound dog kiss on my face.

“Whew. Chloe is still here”, I thought.

I forced my brain to verify the leash was actually still in my hand. YUP! I opened my eyes and focused for a second. Chloe went into a down/stay on her own and rested her head on my shoulder. The weight of my ding-a-ling service dog’s head was a comfort.

I heard something! Another good sign. My cochlear implant was still attached to my head. I focused on the sound and looked up – Up – UP into the tree boughs above me and spotted that rascal squirrel.

Oh.

My.

Gosh.

He had the impudence to sit up there fussing – at US. I couldn’t help but laugh. He was ticked! I laughed all the way up until he skipped away… jerking the branch he was on and dumping snow on my face and chest from twenty feet up. My laughter stopped immediately. I was choking after all…

I sat up and brushed the snow off and started to giggle again. Chloe wagged her tail in delight. It seems she wasn’t going to get a “Denise sermon” after all. Within 10-15 seconds though I was overcome with a different emotion. I sat there crying. Not just silent tears – nooooooo. This was unladylike, deep sobs with intermittent hiccups!

I sat there bawling my eyes out for five or six minutes, comforted by a hound dog most certainly sorry her instincts caused another “Timber…” moment for me.

Yes. I could see the funny. But fast on the heels of the laughter and positive attitude came an emotion near the surface most days. Self-pity. Sorrow. I hate my life.

Is Happiness a Choice?

One of my favorite books is “Happiness is a Choice” by Minirth and Meier. The premise of the book is that especially for those of us living with depression, happiness is a choice. The book’s number one principle is: “Change the way you talk to yourself”.

I’m on board with that. Really!

I am!

You can change some of the negative aspects of your thinking by challenging the irrational parts and replacing them with more reasonable thoughts” (Martin, 2010, para. 4). Whitbourne (2013) explained these, “inner monologues as “self-talk,” in which you provide opinions and evaluations on what you’re doing as you’re doing it. You can think of self-talk as the inner voice equivalent of sports announcers commenting on a player’s successes or failures on the playing field” (para. 1). I believe in the power of self-talk. I believe our “thinker” really can influence our behavior. My husband is a cognitive psychologist. He and I have a lot of discussions as I work on my own Ph.D. about the best ways to change behavior. He – and other professionals like him – believe that if you can simply change what your thinker is thinking, there will be a trickle down effect. It will influence and possibly change behaviors you wish to change. There is a lot of scholarly research and science to support this.

I believe this! I do! But I will be honest for a moment. There are times I want to just say…

SCREW SCIENCE

That’s right. Just in case you even needed MY – or ANYONE’s permission…

It is OK to be upset about the reality of your life.

Living with acquired disability sucks. Hearing loss sucks. Meniere’s disease sucks. How about you? Fill in the blank:

_____________________ SUCKS.

*Deep Cleansing Breath*

I’ve tried to explain to folks who ask, that living with a chronic condition or acquired disability is – on the best of days – HARD.

I still get the flu.

I have still lost people I love and miss them.

I have lost beloved pets.

I get headaches, body aches, and am growing older.

I get mad at my family sometimes.

I experience car problems.

I hate traffic.

I have unexpected bills.

I still have a period (hey! Jus’ layin’ it all out there! <BIG GRIN>)

All of these things happen to me just like they happen to you. Only folks with chronic illness or acquired disability have those things happen on top of what – for them, is the norm… living with challenges daily.

Yeah, yeah. I know!

I still get the flu   I can be thankful I have medicine to help and a hound dog to cuddle with. See? I can see the positive!

I have still lost people I love and miss them  I can be thankful I will see them again someday based on my personal faith beliefs and worldview.

I have lost beloved pets  I have other furry family members and that makes me happy.

I get headaches, body aches, and am growing older  Beats the alternative. Right? 

I get mad at my family sometimes   But I have a family…

I experience car problems.  But I have a car and this time we could afford the “fix”.

I hate traffic.  I have a job to go to.

I have unexpected bills.  But I’m smart enough to figure out how to pay that bill or arrange payments.

I still have a period Yeah. I got nuthin… (LOL)

So can my forced “change thinking” have a trickle down effect and influence my behavior, feelings, and perceptions? Yes.

And no.

Confused? I don’t mean to be the cause of a “What the heck you talkin’ about, Denise?” thoughts.

However, it is important – at least I think it is – to allow yourself to have moments of self-pity. Feel the sorrow. Rail at God. Write “My Life Can Suck” really big and pin it to a wall and throw darts at it. If it makes you feel better, do it. I think it is healthy to “own your feelings” about the reality of your life. It’s hard. You may feel alone. You may want to give up. It’s OK to feel that way.

But then? (Brace yourself…)

Change your thinker. Allow it to do what studies have shown actually works. The “Trickle Down Effect”. I’m here to tell you though that it isn’t a long-term fix. You may have to “adjust the knobs on your thinker” daily. Maybe on REEEEEALLY bad days – hourly!

Do you know what thoughts help me the most?

Keep on keeping on.

I can make a difference in the life of another.

Tomorrow is a new day.

Mean People Suck. (Sorry. That’s my favorite bumper sticker and I *had* to throw it in there).

Yup. They are platitudes. “Feel good self-talk”. But ya know something? It works for me because I also allow myself the freedom to sit in the pine-needles with snow covering my shoulders and bawl my eyes out.

So strive to improve your self-talk. But feel free to wail.

{{{{{{{{{CYBER HUG}}}}}}}}}}}} from me to you!

Denise Portis

©2014 Personal Hearing Loss Journal

Martin, B. (2010). Challenging Negative Self-Talk. Psych Central. Retrieved on March 21, 2014, from http://psychcentral.com/lib/challenging-negative-self-talk/0003196

Whitbourne, S. K. (2013). Make Your Self-Talk Work for You. Psychology Today. Retrieved on March 21, 2014, from http://www.psychologytoday.com/blog/fulfillment-any-age/201309/make-your-self-talk-work-you

Counseling. Only for the Weak and Needy?

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terry and denise

I’m married to a psychologist. I’m 37 hours + dissertation away from my own Ph.D. in Psychology (I know, I know it is still a lot! But to count it down helps! 2016 seems like such a long ways away!). My daughter is getting her Master’s in Psychology. My son is working on his Bachelor’s in Cyber-criminology. Needless to say our family meals – the few we have since our kids are adults now – are very weird. Weird, as in we talk about strange things. “Psycho-babble”. We are psychology geeks. Or is that freaks?

For me, to seek counseling has zero stigma attached. But… some folks do think that seeing a counselor is something to be ashamed of and try to hide the fact they may be getting professional help.

Don’t misunderstand. I don’t think you should tell your life story to every single stranger you encounter who asks, “How are you, today?” But when is it OK to seek professional help and talk to someone about all the things you DO have trouble expressing to anyone else?

I Feel Like I’m not as Independent…

A friend of mine found out I was seeing a counselor. She knows me well enough that she can ask me nosy questions and I don’t even feel as if she is being – well, NOSY. With her permission, I’m copying the gist of the conversation here:

Her: “You are one of the most independent people I know! Why are you so open about seeing a counselor? Aren’t you afraid people will think you aren’t as strong as you let on? I think if I went to see one I wouldn’t be able to let anyone know!”

Me: “Well it doesn’t work that way. I need someone to listen and who will give me objective advice. If they were my bestie like you, they wouldn’t give it to me straight!”

Her: “Hey. I tell you like it is all the time!”

Me: “Giving me a ‘dose of reality’ is different than being objective from a trained, counselor’s point of view. How can something make me less strong when I walk out of there feeling ‘stronger’?”

Her: “I dunno. I thought you were ‘Ms. Independence’. It seems strange to hear YOU are going to see a licensed counselor!”

Me: “You are missing the point. I’m seeing a counselor so that I can continue to be independent about the right things, but am also learning to be dependent in a healthy way. Geesh this life is hard enough without trying to ‘go it alone’. We all need help from time to time!”

She remains unconvinced, but hey! I think she’s coming around.

So Should you see a Counselor?

So how DO you know if you should see a counselor?

Psychology Today has a great little “self test” that helps you determine if you should seek therapy. You can find it here: CLICK HERE

Another great little quiz to help you make this determination can be found here at Psych Central’s website: CLICK HERE

The Huffington Post put out a great article in February, “8 Signs You Should See a Therapist”. You can find that article here: CLICK HERE

Those 8 “signs” include:

1. Everything you feel is intense

2. You’ve suffered a trauma and you can’t seem to quit thinking about it

3. You have unexplained and recurrent headaches, stomach-aches or a rundown immune system

4. You’re using a substance to cope

5. You’re getting bad feedback at work

6. You feel disconnected from previously beloved activities

7. Your relationships are strained

8. Your friends have told you they’re concerned

People with disability or living with invisible, chronic illness can benefit from counseling. Whether you are struggling to cope, grieving “something lost”, feeling angry or depressed, or just feeling overwhelmed, seeking help can prove very beneficial. It doesn’t make you weak. If anything, it shows how proactive you are about your own mental and emotional health. Recognizing that “all parts” of who we are need to be strong is a sign you are being pretty darn good to yourself!

How do I find Help?

Where do I find help? My favorite “how to” article is several years old, but I still think it’s the best advice I’ve seen. You can check out the article by Dr. Aletta here: CLICK HERE

For me, I had to find someone that was “in network”. I can’t afford to pay for counseling other than a co-pay. Sometimes practices will have pro-rated charges based on your income. For most of us though, we have to go see who our insurance will pay for to help alleviate costs. Depending on your insurance, you can probably find a list of “in network” counselors, therapists, and psychologists. For me, finding someone who had similar faith practices was important. Doctrine wasn’t as important as finding someone who believes there is a God. So you may have to go to the web and search too, matching practices up with who your insurance says is “in network”. If you don’t have insurance, or insurance won’t cover counseling, there are still options. (The article I gave you *points up* gives some great tips).

Feel free to comment here or privately email me. I’m pretty open about my own “journey to a healthy mental/emotional, Denise”. If you live in an area where counselors are “few”, you may find assistance at area worship centers. If confidentiality is a MUST (meaning you don’t even want to be seen coming and going), a new trend includes cyber-counseling. A licensed and trained counselor sees you at a designated time through a web-cam, so it is still face-to-face (important for those of us that need to see a face to communicate well).

Denise Portis

© 2014 Personal Hearing Loss Journal

 

 

 

 

 

Hearing Loops Come to Oshkosh

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Juliette Sterkens

Juliette Sterkens

Hearing Elmo welcomes guest author, Juliette Sterkens. Juliette Sterkens, AuD is a Wisconsin audiologist with 30+ years of experience in the field of audiology and hearing instrument fittings.  Dr. Sterkens is currently on a sabbatical from her audiology practice to speak around the country to consumers and hearing care professionals on the use of hearing loops in behalf of the Hearing Loss Association of America.  Her efforts have leveraged nearly 300 hearing loop installations in the Fox Valley and Wisconsin and many more beyond. She is the creator of the www.loopwisconsin.com website and her blog at http://loopwisconsin.wordpress.com .  She has received the Wisconsin Audiologist of the Year, the American Academy of Audiology Presidential Award and the Humanitarian of the Year Award from Arizona School of Health Sciences for her work on a local, state and national level.

Chris Prust of Oshkosh is one of 36 million Americans with a significant hearing loss.  Although she wears a hearing aid and a cochlear implant, it is still difficult for her to clearly hear and understand amplified speech in churches, auditoriums, or meeting rooms.  As a member of the Algoma Boulevard United Methodist Church in Oshkosh, she was delighted at the results the first Sunday the church turned on its new hearing loop system.  “I’m home now and can’t stop smiling.  The system went way beyond meeting my expectations.   I was in awe.  I thought I would never again be able to experience a church service where I could hear every world and be able to follow along with the music knowing I was singing the correct and note and verse,” Chris said.

A hearing loop takes a signal from a sound source — a television or a public-address system, for example — and transmits it through an amplifier to a wire that surrounds (“loops”) the audience. That wire sends a magnetic signal to a person’s hearing aid, which has a telecoil, a type of sensor. The hearing aid wearer then gets a direct, clear signal, one without interference from reverberation and crowd noise.

Hearing loops are most commonly found in auditoriums, concert halls, places of worship and lecture halls but  new applications make it useful for ticket booths, taxis, tour buses, service desks and airport gates. While public installations require a trained installer, a TV or computer can be self-installed by a handy individual. Hearing loops have been in widespread use in public venues in England and the Scandinavian countries for some time, and are now starting to catch on in the United States. (See www.hearingloop.org)

Jim and Vicki Denzin, parents of three daughters, two of whom use hearing aids, are grateful that St Raphael Catholic Church in Oshkosh has installed a hearing loop. “Our girls are now able to understand Fr. Doug so much better” they commented. So pleased were they with the hearing loop technology they also installed a system in their Neenah home. Jim commented installation only took an hour and was not hard to do. Vicki reports her girls love using the loop in the TV room but is also quick to point out that it makes it easier for the girls to ignore their mother when they are watching TV. The loop has one other downside Vicki laughs, “The loop broadcasts to other areas of the house including the upstairs which meant we quickly learned to turn the loop amplifier off when it is bedtime, otherwise they pick up the TV’s audio while in their bedrooms!”

Hearing loops make public facilities accessible for people with hearing loss and brings them in compliance with the Americans with Disabilities Act. In the Fox Valley many libraries, nearly a hundred large churches, the Fox Cities Performing Arts Center, the Oshkosh Convention Center, funeral homes, the Grand Opera House and several retirement communities and senior centers all have taken the initiative to install hearing loops to better serve people with hearing loss.  A list of loops of loops around the country  can be found at www.aldlocator.com

“It is not because the sound is not loud enough, that people who have hearing loss complain that they can’t hear” said audiologist Dr. Juliette Sterkens, an Oshkosh audiologist at Fox Valley Hearing Center, who is on a sabbatical from her practice to
serve as the Hearing Loss Association of America’s hearing loop advocate, “it is because the reverberation and background noise in large rooms and churches make understanding very difficult for persons who use hearing aids. A hearing loop helps to overcome this problem”

Sterkens started a Hearing Loop Initiative in early 2009, similar to an initiative in Michigan (see www.loopwisconsin.info) and today nearly 300 hearing loops can be found around the state.  Sterkens continued “Hearing loops can profoundly affect people who use hearing aids.  When Chris Prust told me that the day the hearing loop was turned on at her church, was one of the most memorable moments in her life because it made her feel “normal’, we both cried a few tears.”

- Juliette Sterkens, AuD

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Who Has a Right to Make Our Choices?

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Ruth Fox and husband

Ruth Fox and husband

Hearing Elmo would like to once again welcome Ruth Fox as guest writer this week. Ruth is a passionate disability advocate and also a photographer! I have enjoyed getting to know her even better through her nature photographs. Recently, Ruth reached out to me to give me some much needed information on mobility issues. If you would like to communicate with Ruth you can look her up on Facebook or email me at denise.portis@gmail.com and I will forward your email to her. Ruth asks some important questions about access issues:

Who has a right to make our choices?

My husband and I are “young” seniors, who have dealt with multiple disabilities our entire lives. Some of these disabilities are becoming more visible as we age.   Both of us have worked hard to reduce our challenges.  This means that we have had to address our barriers regardless of what other people would like to see us do.  We embrace the freedom that mobility and technology accommodations provides us.  Some of our disabilities require alterations to daily living routines and traditional ways of eating.

We enjoy sharing information with other people, so the frequent question “why?” provides opportunity to talk,  in general terms, about hearing loss, cochlear implants, Asperger’s syndrome, food sensitivities,  and Mitochondrial Disease.  However it isn’t always easy, because disabilities can be extremely variable. They fluctuate in response energy reserves, weather, degree of sensory stimulation, health, and mood and basically everything physical, mental and environmental.  People tend to understand “total” easier than “partial”. Explaining hard of hearing, partially sighted, food sensitivity, weakness and discomfort is considerably more complicated than explaining deaf, blind, food allergies, paralysis or pain.  The greater detail required to explain “why?” the more awkward and embarrassing it becomes.

Now the question:  How do we make our choices for personal disability accommodation?  Do we consider what works best for us, or do we deny what is best for us because of the comfort level of peers, coworkers, family members, acquaintances, professional service providers and society in general?

It is a work in process, but my husband and I have found what allows us to be comfortable and productive. It isn’t always easy, as we march to a different drummer, but we live life to its fullest.

Ruth Ilean Fox

—————

Denise Portis, Hearing Elmo

 

Advocacy ≠ It’s All About Me

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Yup. Like most of the Atlantic coastline, we’ve been getting the snow. Enough snow that warranted a “whoops Denise” accident with two emergency room visits to follow. But hey… that’s OLD NEWS now so I digress…

Last week, most schools closed both Thursday and Friday. Since my entire family works at a school, that meant we were all home.

Together.

In the same house.

By Friday afternoon I was BEGGING my husband to get me down the hill and out of the neighborhood. We unburied the car, unblocked our space that the snow crews had “accidentally” blocked off with huge mounds of snow, warmed the car up for ten minutes, and escaped.

It was also Valentine’s Day. My husband knows better than to get me chocolate or flowers. I love cards. I love to eat out. (Something to do with not having to fix it or clean it up?) So we went on a “date”. I was thrilled. Not only had I escaped the house but now I was going out to eat a late lunch for Valentine’s Day.

I’ll admit it. I wasn’t thinking about “pottying my service dog” at home where I had cleared out a space in the grass so the dogs could easily go. My mind was on one thing. Escape. So by the time we arrived at the restaurant, it took seconds for me to realize my mistake. I had forgotten that snow plows pile up the snow on the mulch, grassy areas, or right on the other side of the sidewalks so that the walkway is clear. You can only get to the grass if you climb up a huge man-made snow drift! We got out of the car and my husband looked around.

“Gosh. Can you believe it? What are people with service dogs suppose to do?” he said with heartfelt exasperation.

I looked at him quizzically for a second or two before responding. “Ummm. It’s not THEIR fault that I didn’t take care of pottying MY service dog before I left home”. 

I was so proud of myself. I practically beamed from the inside out. There may have been a faint glow coming out of my ears and nostrils. Yup. I’m pretty sure I was beaming.

My Problem Isn’t THEIR Problem

You see? The only person who is responsible for making sure my service dog’s needs are taken care of are ME. There was a time when I advocated very poorly. Do you know I never once improved my situation by poorly advocating? Poor advocacy is accomplished when your attitude is wrong. These wrong attitudes can include a critical spirit, self-pity, self-righteousness, indignation, pessimism, and a persecution complex.

Sometimes people with invisible illness or disability advocate poorly because we are fed up. Maybe you have faced very real discrimination. This can make us feel defensive. Worse? It can make us go on the OFFENSIVE. However, advocacy is similar to a trial. We plead our case, provide evidence, and attempt swaying another to do the right thing and perhaps facilitate change, follow the law, understand our predicament, or simply raise awareness.

It was not the responsibility of Outback Steakhouse to make sure my service dog had an easily accessible place to potty before entering the establishment. Had I gone in and demanded accommodation for something like that I wouldn’t have gotten very far. I did let them know that the crew they hired to plow their parking lot had piled a bunch of snow up in a handicapped space, “… and what was someone to do who wanted to eat out and had mobility issues, needing the space?” (I’ve noticed people listen to a person with disability advocating on behalf of another with disability).

Unfortunately, this doesn’t mean that you never have to…

lock and load” (Ok. That’s is a bit much, yes?)

gird up your loins” (Umm. Creepy much?)

put up your dukes” (*rolls eyes* What is this? A boxing match?)

FIGHT FAIR. That’s right. Sometimes you may have to fight to make sure your rights as a person with disability or invisible illness are upheld. But remember, this is about equality, not superiority. In the end, you want to sway others to your way of thinking or to understand the law. This isn’t about special privileges, recognition, or “it’s all about me”. That has never defined advocacy.

Denise Portis

© 2014 Personal Hearing Loss Journal

Talents and Skills

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I hear folks use the words “talent” and “skill” interchangeably a lot. Maybe it is because I am an English teacher’s kid, but vocabulary is important to me. I have always tried to learn new words and love word puzzles and word games. My husband, Terry, absolutely refuses to play BOGGLE with me, but he has finally beat me in SCRABBLE. The first time I heard a speaker use the words “talent” and “skill” interchangeably I sat squirming in my seat thinking, “for real?”

Maybe speakers do this because we often use talents and skills together to accomplish goals? I’m all for that.

According to Dictionary.com a talent is:

tal·ent [tal-uhnt]   noun

1. a special natural ability or aptitude.

A skill is:

skill1 [skil]   noun

1. the ability, coming from one’s knowledge, practice, aptitude, etc., to do something well.

(Since both definitions include the word “aptitude” – I’ll just throw the definition out there as “capability; ability; innate or acquired capacity for something”)

So a talent is something we are born with and something we are naturally gifted at doing. Some folks are athletic (I hate ‘em – just kidding!). Some are talented musically. Some people are artistic. My sister in Texas has two little boys that I love hearing about through Facebook. Both my kids are in their 20′s, so it is fun to re-experience “childhood” through my nephews. One of her boys is very artistic. He was drawing very early. The other is very athletic.

Talents are things we can EASILY do, because we are talented with that ability. We can practice and improve our talents, but these are things we do almost automatically that other folks have to really work at to be even half as successful.

Skills are developed and honed. Skills can be so well learned that they eventually look like talents. I had a friend who was a gifted pianist. I told her one day, “I envy you this talent! You make it look so easy!” She set me straight right away. She had spent decades in piano lessons and practice hours, developing a skill in playing the piano because she enjoyed it so much. She was firm about it not being a talent, however. “I wasn’t born musical, nor in a family who even enjoyed music. I had to work hard!” For her, playing was a skill, one she has mastered.

Skills can be something we learn that are something we are not actually talented at doing. Maybe you need the skill for a job. Maybe you developed a skill to improve your life.

Talents, Skills, and Disabilities

People with disabilities are born with talents as well.; even if the individual has a congenital challenge and not an acquired disability! I have met people with significant challenges who displayed (and proudly showed off) wonderful talents. They may have had to learn how to use their talents in an nontraditional way, but they find a way to showcase their talents.

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One of my favorite “differently abled” people is Joni Eareckson Tada. She was injured as a 17-year-old in a diving accident. She would live the rest of her life as a quadriplegic. You can’t feel sorry for Joni, though. She is a talented artist (she paints with her mouth), song writer, and singer. Was Joni artistic before her accident? I just don’t know. I don’t know if her ability to live life enjoying and using specific things and abilities, are talents or skills for her. That isn’t the point though. In spite of significant challenges, she creates things that are so wonderful, they touch the lives of others.

Do you have a disability? Do you live with invisible illness? A chronic illness or difficulty? You have talents. We all do. Some discover them much sooner than others. Some may have to RE-discover talents if a disability is acquired later in life.

Skills are something any person can develop. People with autism, folks who live with paralysis, individuals who live with terminal illness… all can develop skills. Do you remember the definition of skill? “… the ability to do something well”. This can produce healthy, positive self-esteem. This can benefit others. Everyone can develop skills – though it may seem really difficult at times and you may have to make a lot of adjustments!

At a very young age I discovered writing. By “discover” I mean that I found out that writing put a smile on my face… a pep in my step… a wiggle in my – erm.

I use to love to play “school” (much to my younger siblings dismay). I had stacks of journals and diaries. One of the biggest WOW moments in high school was when my respected English teacher, Mr. Summers, told me “Denise? You should become a writer. You are talented and skilled“. Wow. He used BOTH. I carried the glow of that compliment all through my early adult years. I have been writing ever since.

But… my eyesight is failing. So I type and read with a very large FONT. My fingers have neuropathy and it is hard for me to hold a pen or pencil. (Just ask Chloe. It is the #1 thing she retrieves for me at school each day!) I have less trouble when I type, however. This means that most of what I write I do so through a keyboard… the old fashioned kind. (Love my iPad, but I cannot type on virtual keyboards!)

You may have a “new” for you challenge or difficulty. Your talents haven’t changed. Your skills have not changed and you can still learn new ones. You may have to work at it harder or approach things in a new way. Don’t give them up. You can even learn new skills – using a talent! I have a late-deafened friend who is a talented photographer who is still “learning” and practicing, but did so after she became profoundly deaf (now with CI’s). Another friend began dancing, and is in numerous competitions and showcases each year! Don’t be afraid to dream. You, too, can DO IT!

Denise Portis

© 2014 Personal Hearing Loss Journal

Illness Saved My Sex Life

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Rachel and husband on her wedding day...

Rachel and husband on her wedding day…

I cannot remember who found “who” first. Rachel Meeks and I have exchanged emails and virtual “high fives” for a couple of years now. She is the talented and witty author/owner of “Do I Look Sick?”. You can check out her blog here: http://doilooksick.com/  Rachel has a knack for telling things like it really is. Folks with invisible illness and disability have trouble articulating what it is like to live “this way”. Rachel doesn’t have that problem and welcomes dialogue and comments on her blog. Recently, SEX was discussed here at Hearing Elmo. Even folks without disability or invisible illness shy away from the topic. Not us. It is Rachel’s – and my own – hope, that by openly talking about this topic, people may discover they are not alone and that there are others who deal with the same issues. Hearing Elmo, welcomes Rachel as a guest author this week!

Just after I got engaged to my high school sweetheart, I was diagnosed with endometriosis. All chronic illness has an effect on sex, but endo especially so – it’s a chronic pain condition in which the lining of the uterus ends up outside the uterus, causing intense pain centered around the uterine area – AKA all your sexy bits are the parts of you that are “sick” and hurting. That’s not really something you want to tell someone who thought they were marrying a…to be frank, normal person. Sex isn’t everything in a relationship, but it is a lot – especially to men. I’m not saying that to be sexist or anything, I just mean that there’s scientific proof that men have a greater physical need for sex, and that their minds are more geared towards sex romantically speaking. The way that long talks and thoughtful gifts say “I love you” to a woman is the way that sex says “I love you” to a man.

That’s what I’ve come to know after almost four years of marriage. But when I was a 19 year old fiance, I had a very different idea of the role sex plays in a relationship. In my mind, sex was like, the second most important thing just under love. And I had grown up believing the stereotype that men enjoy sex more than women, and that it was mostly an act of giving. That’s a nice fluffy way of saying I didn’t know anything about it because I didn’t think I was supposed to. I didn’t know what I liked or didn’t like sexually, I wasn’t very familiar with my own anatomy, and sex was actually even embarrassing just to think about, much less talk about. So now, I wasn’t faced with talking about sex – no, it was worse. I was going to have to talk to the one person who I really desperately wanted to like me and only know the best things about me, and explain things I barely understood. I’d have to explain the gross stuff that makes up my period was all over my gross organs. I’d have to use the word “uterus.” I was embarrassed enough to die. Luckily, he really loves me and never had a thought of calling off the wedding – even with a foreboding sexual forecast and the possibility of fertility problems down the line.

Rachel 2

“Coming out” to him about my condition was a pretty good indicator of how our sex life was going to be, even if I never had endo. I’ll be blunt – sex was awkward for us. We had passion and desire but we also had totally unrealistic expectations of TV sex that’s always perfect. We both really wanted to have that wordless, passionate sex that you see in movies. Without any feedback or communication, neither of us was getting a lot out of our sexual experiences. They were nice. They were just ok. They were….very odd. So we thought we must just be bad at it. It also didn’t help when it was extremely painful because of endo. We both felt like such losers. You never hear about this kind of thing. Couples get married and you just assume that because they’re in love, sex is smooth sailing. It’s actually really complicated, and I wish the world was less hush hush about it. At the very least, I wish things were open enough that we would have somehow known we weren’t the only ones.

After we became disillusioned about magical movie sex, we got bitter and mean. We wanted to have sex, but I was always hurting and we didn’t know how to talk about it so usually when we’d try, it would turn into a fight. What’s interesting is that when you get angry, you also get honest.

After our stormy stint of fighting over sex, we went through a dry spell. We lost the anger, but kept the honesty. I started talking to him more about endo and even bringing him to the OBGYN with me. We’ve always been best friends who could talk about anything – except sex. Once we started talking about endo, we broke down the last barrier between us. We became closer than ever. And we brought that talking to bed with us. We let each other know what feels good and what hurts. We give a heads up when we’re going to change positions or we want to try something new. We actually tell each other what we want and what we like. If I didn’t have endo and we didn’t have to go to the hospital and I didn’t need his help, I might never have opened up and talked with him like this. Now that he has a chance to fully understand my disease, he can help me with medical decisions too. But most importantly, we can both have a real sex life now – not only a fulfilling one physically, but also emotionally.

Endo sucks, and it sure makes sex a challenge. But I can also look at it as an opportunity for us to grow closer. When it feels like your illness is in the way of intimacy, try to see the way around it. It may just be better than your original plans.

Rachel Meeks

Do I Look Sick?

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Denise Portis

Hearing Elmo

Post-traumatic Growth (Part 2)

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Post-traumatic growth. If you missed part 1 of this series, click HERE for that if you wish. In the first post we looked at what can cause post-traumatic growth, and what changes might occur in our lives as a result of the growth.

This week, however, I want to address the WHY behind growth. Have you ever wondered why some people come out on the other side of trauma a much better person? Why do some people give up, while others thrive? Is it something within the person themselves, or is it the environment they are lucky (or unlucky) enough to be in post-trauma? Does personality style have something to do with it? What decisions did the person make to get them through the worst of it? What was the time table of those decisions? Is there a magic formula? (Would you like to participate in a survey? It is very short, confidential, and your “voice” will be used in research about post-traumatic growth! Click HERE and scroll to the bottom of the page for the link about the short survey)

These are all important questions. These important questions are difficult to answer, however. In all the years I’ve thought about these questions and other related “survival” issues, I believe little can be assumed and the variables are infinite. There are, however, a few key points that I think are valid. You may not agree with me and that is OK. After all, this is not a scientific analysis and I only have personal experience and the testimony of others to generate my list of probable reasons some people experience growth. So here we go! :-)

Taking One Day at a Time

One thing I have noticed about people who experience growth, post-trauma, is that they do not start out with long-term plans. Especially in the beginning – you may be in survival mode. You go to bed each night with the sense of, “Whew. The day is over. I made it“. There is not any fanfare or celebration of the fact, it is simply what IS. You survived.

In that day-to-day survival you may have drawn on specific helps that for YOU, allowed you to make it through that day. It may be faith, a supportive person or persons, a mentor, a counselor, a cause or purpose… love. It may even be things that some people define as negative: anger, stubbornness, revenge, or even hate. By themselves one asks how can something so ugly be used to help you survive? These things may be inter-woven into your thoughts and feelings and played a part in your survival for that day. Positive or negative, it isn’t one specific, “magical” formula. I have met people from all walks of life with different supports in their life, some of whom have grown post-trauma and some who have given up.

For some, enough time has gone by that you may feel like you can begin to look and plan for further down life’s path. Just do not be surprised if something happens and you find yourself in survival mode again. It could be triggered by something that seems so irrelevant and inconspicuous. Why is this true?

I think it is because post-traumatic growth is a PROCESS not an outcome. Those who grow do so because they continue to “take one day at a time”. They recognize there will be setbacks. They recognize there isn’t a prize or even a finish line. They know and realize that life after trauma may include days in which you are only able to trudge through.

Supports

I have met a few people who insist that they made it through a traumatic experience and grew from it all on their own. They found the wherewithal inside themselves and pushed through the crisis. However, I believe that even those whose “claim to fame” is that they are completely independent miss the point. Someone, somewhere had an impact on who they are as a person to be the kind of survivor who could dig deep and push themselves. It may not be someone who stood right next to you while you began your “life after trauma”. It may be that it was a person or persons who impacted your life years ago.

For many, however, it is a current support system. You do not have to be married or in love. You don’t have to be a person of faith. You don’t have to have a BFF. You do not have to have a dog (grin). Sure… these things can be used as supports, but they aren’t necessary. I know this because I’ve met far to many people who have experienced post-traumatic growth who do not have these things. The key is that they reached out to something or someone.

The danger of experiencing the worst life has to offer is isolation. Not solitude – something we all need from time to time to grow our souls – but isolation is the enemy of those seeking to grow post-trauma. Some folks have tried to tell me that they isolated themselves to survive. It hurt to much to interact with others “after”. If you isolate yourself long-term you are not going to make it. I’m not trying to scare you. We are human beings and at our very core we need other people. When you isolate yourself, another cannot find you to help. Those YOU were meant to help are also out of reach. The way to avoid isolation is to reach out. Join a support group. Go see a counselor. Write. You have to let others know you need them.

“And in this curious state I had the realization, at the moment of seeing that stranger there, that I was a person like everybody else. That I was known by my actions and words, that my internal universe was unavailable for inspection by others. They didn’t know. They didn’t know, because I never told them.” Kim Stanley Robinson.

An important side note? If you reach out to someone who needed you immediately after a traumatic event – a life-altering illness or diagnosis, the death of a loved one, victimization, violence, catastrophic loss – don’t forget to continue to check in with them FOR THE REST OF THEIR LIVES. Remember. Post-traumatic growth is a process, not an outcome. They remember the anniversary of the death of their loved one. They remember the accident that changed their life forever. They still have nightmares. They still need you. Continue to be there for them. When something traumatic happens to you (when – not if), you will need people who walk along side of you until the end as well.

Finding a Purpose

No worries. I’m not going to spout off an over-used platitude about lemons and lemonade. When we experience something traumatic we become an expert – at times an unwilling one. No one understands you like YOU do. Some people who experience traumatic events, collaborate with others and see significant changes in laws, supports, or after-care programs. They have the passion to see it through and to demand change.

Others, however, may not experience growth in such a measurable way. Yet, they too make a difference. There is a person in my life who has advanced MS. She writes me about three times a year. Her letters are written in a huge font because her eyesight is so poor now. I believe it very likely takes her hours to write me one newsy email. For a long time she had no idea what those emails meant to me. And so I told her. She is a transparent, significant human being who just so happens to excel in encouragement. She has impacted my life. I tell her so. She doesn’t get out much and often isn’t healthy enough for visitors. But she can use her computer on a good day – and she reaches out. She chooses people she thinks she can encourage and writes them. She may have to nap the rest of the day just to recover. She has a purpose. She matters and what she does matters.

It can be big or small. It can be something related to what you went through yourself, or a path that simply has you helping others that may be hurting in a different way. Find something or someone to be involved with and do it with passion and a purpose. It is often that cause or purpose that sees you through those days you find yourself back in survival mode…

… because it is a process – not an outcome.

You, too – CAN

I tried to grow tomato plants one summer. After only 4-5 weeks, the plants began to die and I noticed a smutty, yucky, kind of growth on the leaves, stems, and fruit. Disgusted, I pulled them all up and soothed my hankerin’ for ‘maters by visiting the produce department and local farmer’s markets. The next summer I carefully tended to new “baby” plants and tried again. In less time, the fungus-like growth was back and I was mad – and hungry for tomatoes.

I had to empty out the large planters and scrub them down. I had to buy new top soil. I had to do – what I SHOULD HAVE DONE the first time ’round. By the early Fall, I finally had fresh tomatoes from my own backyard.

You may not be experiencing growth because you have isolated yourself. Perhaps you tried – too soon – to make long-term plans. Maybe you didn’t immerse yourself in a cause to fulfill that need we all have to have a PURPOSE. Maybe you aren’t growing because you need to transplant yourself.

Are you surrounding by negative people? Do people tell you that you CAN’T do that NOW? Sometimes well-meaning people promote fungus-like growth. They destroy our fruit. We need to set boundaries and show them we CAN. We need to find people who believe that we CAN.

I welcome your input and feedback.

Denise Portis

© 2014 Personal Hearing Loss Journal

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