They May Not Get It

(Hey… I’m not an artist! But have you ever felt this way?)

One of the questions I am asked the most by folks who contact Hearing Elmo, is “Why doesn’t my family accept and understand who I am NOW?”

Before I even begin writing, let me express my hope that many of you will respond and share as I am very aware I do not have all the answers.

Why It Hurts

1. It hurts because the transition from “normal” to where you are was painful.

The school of hard knocks is – well – hard. Acquired disabilities and invisible/chronic illness are not easy to get use to when they first change a person. The journey from diagnosis to acceptance is a hard one. It hopefully has made us “better” and not “bitter”. I can attest to feeling stronger, more confident, and much more in tune with who I really am post-disability. Some of us have progressive symptoms and illnesses. We may adjust, only to have to do so again in a year or so. This too can grow us. But honey? It isn’t easy.

However, BECAUSE it was hard, it is hurtful when folks who knew us WHEN (back before our diagnosis), don’t accept or try to understand who we are NOW. We are still the same people. Our personalities have not changed. Our strengths and weaknesses are all still present – although you may have developed some new strengths because of your life path. So it is difficult when family members may sometimes be the hardest to teach how to talk to us now that we have a hearing loss. Or perhaps you are frustrated because a family reunion at a theme park is not ideal for you because you cannot ride any of the rides. Maybe you are utilizing a wheelchair, walker, or cane. A picnic and hike may not be a good way for you and your siblings to catch up – even if it has been a year since you’ve seen each other.

It’s not like we want recognition for the pain we’ve experienced. We aren’t looking for a medal. However, seeing any eye rolls or hearing frustrated sighs serve only to remind us our family

STILL

DOESN’T

GET

IT.

2. You expect your family members to care enough to accept you.

It’s not wedding vows. “In sickness and in health, for richer or for poorer…” But we have a reasonable expectation that our family members are going to love us and be there for us regardless. It doesn’t matter if we acquire a disability. We are still the same person. If Lymes disease has you aching and feverish a week out of every month, we expect compassion, not disdain. If CFS or MS has you weary, tired, and feeling as energetic as a centenarian, you expect understanding and maybe an offer to run an errand for you. If your eyesight is worsening due to various illness or disorders, you never expect frustrated outbursts when you explain you don’t have a ride to go to your nephew’s graduation.

But friends? Family members can need educating. Advocacy may begin at home. We wish it wasn’t necessary, but it may be very necessary. My kids grew up with me at best, hard-of-hearing. My husband, however, knew me before hearing loss. So I have to be willing to tell (nicely) him what works and what doesn’t. Don’t be surprised if it takes numerous lessons. Some heads are thicker than others.

What to Do

Talk to them. I’d elaborate, but honestly? You need to talk to them. Explain how you feel. Be willing to be vulnerable. Start with phrases that explain specifics and not general accusations. Example:

“When you sigh as I wobble into a shelf at the store it really hurts my feelings. I can’t help it when my world ‘twirls’. It’s hard enough to face the stares and hear the whispered remarks from strangers. I expect better from you. I expect your support.”

They May Never Get it

We can choose our friends, but we don’t choose our family. Blood is blood and it simply cannot be changed. However, you do not have to put up with people who ridicule you or try to injure you with words. You do not have to deliberately spend time with people who only make you feel worse. Sometimes? Sometimes those toxic people are family members. I hate it for you. I hate it for me. But it can be the painful truth.

Sometimes those friends that we choose? They become family. Maybe not by blood. Perhaps not by legal adoption. But folks who encourage us, lift us up, make us better people, understand, lend compassion and energy? They can become like family members. My heart’s desire is that you will find some folks like this if you haven’t already.

I welcome your thoughts on this. Knowing family members may grieve the person they once knew, or have trouble adjusting to the fact you are “differently abled” is important. Be patient. But also put healthy boundaries in place to keep unhealthy people from de-railing your progress with your own adjustments.

Denise Portis

© 2012 Personal Hearing Loss Journal

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It’s Not Easy Being Green

I love Kermit. For the record, I loved Kermit before Miss Piggy loved Kermit. In the early 70’s, Kermit first poignantly croaked out that “it’s not easy being green”. Being green was something he could not help. It simply was.

This song has since been associated with people lamenting their own self-identity, yet coming to terms with “it being what it is”. By the end of the song, Kermit admits it’s OK to be green and that it is how he wants to be.

Am I OK Being This Way?

Something I have struggled with in acceptance of acquired disabilities is “the new me”. You see… I wasn’t born green. I can’t even say the transformation was similar to the beautiful miracle and mystery of a caterpillar changing into a butterfly.

And yet… it’s not like I asked to be late-deafened. It’s not like I asked to have a balance disorder like Meniere’s disease. But just like Kermit being green, it is what it is. There is no changing it.

So if this is me now, am I OK with it? Anyone with acquired disabilities ever struggle with that acquisition? If I asked for a show of hands, you’d first notice my own raised palm. I think you’d also notice a great number of hands. You aren’t alone.

Like many of you, I feel good about who I am much of the time. But I’d be lying if I said it’s always easy to be me. It’s not. So what to do?

Acceptance ≠ Resignation

I’ve never heard a person with acquired disability or chronic illness say, “This is easy”. It’s not. Yet do you know what I have discovered? I have this fuzzy, old memory of “life before disability” and IT STILL WASN’T EASY. My friends? Life is not easy. If you haven’t figured that out yet then you are still very young. Or, perhaps you are a frog.

I am discovering that acceptance of where I am (or even where I may end up), does not mean that I give up. Nor does it mean that I am resigned to an unhappy, unfulfilled life with no chance of ever giving back or having a purpose.

I get some “flack” with some of my readers about using the word “disability”. Rest assured, I welcome ALL opinions and discussion about the posts here at Hearing Elmo, as do the guest writers who participate. Some have suggested that using the term disability lowers one’s expectations and influences self-esteem. I understand the argument and point of view by those who believe this. I use the term because it is the terminology used by the ADA which ultimately protects my rights as a person with disability. It is about my freedom as a person who negotiates life a little differently. You may use disabled, differently-abled, special challenges, etc. In the end though it is green; though some may call it lime, olive, or chartreuse.

So today, August, 20, 2012, I am a person with disabilities. It’s not easy. But it isn’t impossible. Bottom line, because of who I am today, I compromise. I’m going to Hershey Park with a big group of couples from our church. I’m the self-designated pocket book holder. I won’t be riding any rides. I cannot. But I anticipate a day of fun and fellowship with other folks my age. I don’t choose not to go. For me, that would be giving up so it is not an option.

I don’t use the phone well, but I can use captioned phones, assistive technology, and my cochlear implant to make do. I use email a lot – and yes, FaceBook too. I walk like the world is in motion – especially on rainy days. Yes, yes, I know. The world IS in motion, but trust me! My earth’s rotation is faster than YOUR earth’s rotation. So I often walk with a cane. I have an assistance dog who counter-balances, and retrieves things I drop. I say, “Whoa!” a lot.

Don’t Pin a Super Hero Cape on Me!

Before you pin a super hero cape on me, please know that I don’t always have good days. I don’t always wake up and believe I can take on the world. I do not always look in the mirror and like what I see. There are times I worry about where I am in terms of what I can and cannot do. What is important, I believe, is what you do after having those very normal feelings. Worried? Totally normal. Depressed? This can be a very normal reaction. Pissed? Believe it not, being angry is a normal response to acquired disability. When you STAY worried, depressed, or pissed it becomes a problem. Don’t be afraid to talk to others. Perhaps you need to see a counselor. Maybe you need to do something just for YOU to work off some of that negative steam.

You will never hear me say it’s easy being green. It’s not. But acceptance of where we are allows us to then LIVE and even to give back – to be productive and have a life of purpose. Just like Kermit croaks, we may not be sparkly and flashy like others. Within each of us is the desire to discover and acknowledge that our being green – is OK. Perhaps even good.

I welcome your thoughts on this!

Denise Portis

© 2012 Personal Hearing Loss Journal

It’s Not Easy Being Green lyrics

It’s not that easy being green
Having to spend each day the color of the leaves.
When I think it could be nicer
being red or yellow or gold
or something much more colorful like that.

It’s not that easy being green.
It seems you blend in with so many other ordinary things.
And people tend to pass you over
’cause you’re not standing out like flashy sparkles in the water
or stars in the sky.

But green’s the color of Spring.
And green can be cool and friendly-like.
And green can be big
like an ocean
or important like a mountain
or tall like a tree.

When green is all there is to be
It could make you wonder why, but why wonder why?
Wonder, I am green and it’ll do fine
it’s beautiful!
And I think it’s what I want to be.

A Whispered Thank You

Praying Mantis calisthenics – photograph by Deborah Marcus (NC), friend and nature photographer

Not long ago while visiting in NC, I spent an afternoon with my friend, Deb, at the North Carolina Zoo. Deb takes pictures of life in nature; everything from plant life to animal life (and everything in between). She sees things that most folks miss and often stopped and pointed out things I would have just walked right by as my “notice-er” is out of practice. When Deb takes a picture she always whispers, “thank you”. When I first caught her doing it we were just thrilled and tickled that I was actually hearing her whisper of thanks! Cochlear implant sisters-in-arms, we always celebrate those moments.

However, since my visit I have given her habitual murmured thanks a lot more thought. When I tend to think on somethin’, I ponder, speculate, question, and soul-search. Eventually I write about it – even if it takes me almost 15 months to get around to it!

Like a Dangling Spider Cares?

I have to admit, when I first heard her thank a lily-pad, skimming dragonfly, I thought, “Umm. This critter does NOT care if she thanks it for the Kodak moment or not”. But it’s deeper than that. An attitude of gratitude and respect is cultivated. We certainly aren’t born with it. I remember teaching my toddlers “please” and “thank you”. Sure… some of that can be a learned behavior from appropriate modeled examples. Some folks are just naturally friendly and easy-going. Some walk around like a sour puss (I’ll not mention any names) and thanks is a foreign language. Most of us fall somewhere in between, our emotional health dependent on life circumstances. This is why an attitude of gratitude must be created and exercised faithfully to instill a HABIT.

It starts with the small things. Walking out underneath my porch to dispose of an empty plastic container, I thank the spider who just snagged that mosquito. (No. I haven’t found it in my soul yet to thank any skeeters). I try to thank my family members for doing things – EVEN IF IT IS THEIR JOB TO DO SO. I thank my students for turning their work in on time; or, if late, for eventually turning it into me! I thank the very pregnant, adjunct coordinator for my department, as she certainly has better things to do (like nesting) than to email all of us our reminders for the semester. I thank the person in training at the U.S. Post Office for waiting on me – which they stuttered out a very surprised “Your welcome!”. (Doin’ everything I can to assist in a decrease of “goin’ postal”). I thank the cashiers at the grocery store, Wal-mart, and CVS. (I thank the produce department workers, which is only funny to you if you know me well). I thank my waiter/waitress every time they do the smallest thing for me at a restaurant… even though it is their job. I thank “hound dog” for every task she does for me, which only increases the tempo of her wag. Do you see how far this attitude of gratitude can go?

Sitting with a friend waiting for small group to start one Sunday morning, I startled her by saying, “thank you for being my friend”. She sat there with her mouth hanging open waiting for “more” or for “the other shoe to drop” (like… would you DO THIS FOR ME?) She said, “That’s it? Well gee. I’ve not received a thanks like that in awhile!” I grinned at her but thought, ►well why not?◄  Why do we not thank the folks in our life even when there is no real reason? Keeping it to ourselves doesn’t bless anyone.

“Silent gratitude isn’t much use to anyone.”

~ Gladys B. Stern

Expressing our thanks must be EXPRESSED. William Ward said, “”Feeling gratitude and not expressing it is like wrapping a present and not giving it.” According to “Happy Life U” (you should check it out!) expressing thanks can actually improve emotional happiness.

New research shows that practicing gratitude may be the fastest single pathway to happiness, health, long life, and prosperity. In a remarkable study performed by Dr. Emmons, people who kept a gratitude journal for just 3 weeks measured 25% higher on life satisfaction after wards. They exercised more, drank alcohol less, and their families and friends noticed that they were nicer to be around. And the effects lasted for several months beyond the initial 3 week study. Other studies on gratitude are confirming these results. People who take the time to notice and appreciate the good things that come their way through grace, or luck, or the goodness of others are happier and more peaceful. They do better on cognitive tests and tests of problem solving skills. They practice healthier habits, have better relationships, are more optimistic and live longer. Gratitude is one powerful emotion (Happy Life U, 2011-2012, para. 5).
 

So What Has This Taught Me?

I already explained I’ve been thinkin’ on this topic for better than 15 months. I’ve even followed up with a conversation or two with my friend, Deb, about this which likely has her wondering why this is so important to me. I write a great deal about invisible and chronic illness, acquired disabilities, and living victorious lives in the bodies in which we find ourselves living.

Naturally, I had to research if being thankful could help folks in the community of souls of which I self-identify. Wood, Joseph, and Linley (2007), suggest that gratitude can be a powerful social support tool that folks with disabilities can use to help them. They asked 236 folks with various burdens (disabilities, chronic and terminal illnesses, addictions, etc.) to participate in a study that asked them to keep a gratitude journal. Folks discovered their written “thanks” eventually jumped off their pages and out of their mouths. “Gratitude correlated positively with seeking both emotional and instrumental social support, positive reinterpretation and growth, active coping, and planning” (Wood, Joseph, & Linley, 2007, p. 1076).

Allison Shadday has MS. She believes we need to shift our attention. “Sometimes we all have to slow down intentionally before we’re able to genuinely appreciate the many positive aspects of our lives. If you find yourself feeling critical or negative during the day, take a deep breath and redirect your attention to something for which you’re grateful. Notice if your body becomes more relaxed and your breathing more steady. Tune in to how your attitude shifts when you focus on the sweetness in life. This is living consciously” (Shadday, 2006, p. 51).

It seems… being thankful makes us healthy. More than that… it can make us HAPPY. The recipient of our thanks may not deserve it. They may not look like they need it.

Do

It

Anyway.

I think you will find it can change YOUR life, for the better.

Denise Portis

© 2012 Personal Hearing Loss Journal

Note:  You can “see” and “hear” more from Deb at http://visionsofsong.wordpress.com/

Happy Life U. (2011-2012). New Science of Happiness. Retrieved August, 12, 2012, from http://www.happylifeu.com/Attitude-of-Gratitude.html

Shadday, A. (2006). Embracing an attitude of gratitude. Inside MS, 24(6), 50-51.

Wood, A. M., Joseph, S., & Linley, P. (2007). Coping style as a psychological resource of grateful people. Journal Of Social & Clinical Psychology, 26(9), 1076-1093.

Unexpected Perk, or Bother?

Several of the emails I receive through Hearing Elmo each week are questions about assistance dogs. This week is actually “Assistance Dog Awareness Week“, so I wanted to take a few minutes to talk about life with an Assistance Dog.

The first thing I always tell people who have questions is that if you are not prepared for the fact that an assistance dog will draw attention to you, then PREPARE YOURSELF. More importantly? If you are not comfortable with the attention, then an assistance dog is not for you.

Because I have a hearing loss and because I don’t hear well in stores or crowded places, I am oblivious to all the comments my family members DO hear. “Look at the dog!” “Oh look, a working dog!” “Why is that dog in here?” “Mom, why does that lady have a dog in here and why is it wearing a saddle?”

Assistance dogs lend independence to those who chose to mitigate their disability or illness with these special canines. I never worry about missing a phone call. I can do laundry without assistance from a human family member. I no longer burn supper. I always know when someone is at the door. I can shop and go out in public and never worry about not being able to bend and pick something up – important as I constantly drop things.

Some things you may not know that are actually perks of having an assistance dog?

1. Pre-Chloe, a routine doctor’s visit would result in the 3rd degree about why I always have so many bruises. It can be tiresome to field questions about whether or not I’m in an abusive relationship, when I simply fall or run into things a great deal because of Meniere’s disease. Now, Chloe lends legitimacy to those bruises. She reminds doctors why I have bruises because folks don’t go to the doctor with a dog partner if they didn’t need the assistance.

2. I’m rarely bumped into or shoved out of the way now in public. When you don’t hear well in these venues, impatient shoppers who don’t give a “fig” about why you are standing looking at dancing electronic flowers in the garden department, assume I’m being stubborn about moving to let them by. Now they see Chloe and if she doesn’t notice them and cue me, they carefully maneuver around me.

3. I never receive comments like “It’s a little early to be drinking isn’t it?” or “You should be ashamed of yourself” when I’m seen weaving a bit on rainy weather days (comments that have really been made). In the past, if I slammed into an end cap in a store, those around me assumed I was high or drunk. Now people see Chloe and think OR SAY, “Gee, it’s great she has that dog to help her”.

4. I’ve grabbed onto a fellow client’s scooter before (sorry, John) when I almost fell down. He understood. However, when what you grab is a nearby shopping cart, others aren’t as understanding. I once had a grandmotherly person stick her finger in my face and sternly say, “Let… GO”. I mumbled an apology and went my way. Now that I have Chloe, the most anyone will say in a “near swoon” moment is “Are you OK?”

Assistance dogs help people with hearing loss, mobility issues, seizure alert, PTSD, diabetes/blood sugar alerts, vision loss, balance problems, fine motor skill difficulties, and much more. I hope the next time you see someone with an assistance dog in public that you maybe take a minute and tell them that you think their independence with their canine is a great testament to courageous people. Don’t pet the dog or distract it though (grin).

Denise Portis

© 2012 Personal Hearing Loss Journal