disability – Page 6 – Hearing Elmo

Road Signs

Published on September 10, 2015 by hearingelmo1 Comment

I’m directionally challenged. When I say that, I mean that I even have trouble following SIRI-instructed GPS instructions. Where I grew up it was really easy to tell North from South and East from West. The grasslands of Colorado will do that for you. However, after I moved to the city after high school I’ve had trouble with direction! I remember being so surprised at all the street names. I mean… I grew up on Road W. (I’m not kidding). I lived 1.5 miles east of my grandparent’s home. I knew this because my hometown was North, and my grandparents lived 15 REA poles adjacent to us on the “sun setting” side. I know you think I’m making this up, but I was truly disoriented when I discovered directions included street names and not landmarks. Then I discovered traffic signs that we never had in Baca County! I mean… “TRAFFIC CALMING”? We hardly had a need for stop signs, let alone traffic calming signs.

Last week on a back road–a short cut, carefully taught by my significant other–I encountered a “Traffic Calming Ahead” sign. Now granted… this sign has likely been there all along. However, I just HAVE become confident enough to notice things like traffic signs as I’ve been too busy looking for that white house with the green shutters (cuz – yeah. I still don’t use street signs so please don’t tell my husband). As I passed the sign, my first thought was, “Whaaaa????”

I’m very eloquent when talking to myself. As I drove a little further there was a big speed bump in the road. Do you know I almost had to pull over to the side of the road to figure on what a speed bump had to do with “Traffic Calming Ahead”? I forced myself to go on, while my thoughts just jumbled together.

After I figured out what it meant, my next thought was, “Heck. What happens when the sign says, ‘TRAFFIC DRAMA AHEAD’ “? I guess I hope I don’t ever have to find out.

I suppose it’s nice that the city thinks so much of drivers to warn them in advance when they are going to force a change in driving attitude. Wouldn’t it be nice if we had road signs as we traversed LIFE?

Road Signs

It took me awhile to figure out, “Bridge Ices Before Road”. Longer still to figure out:

Someone, somewhere, has been very conscientious about what lies ahead. Why can’t we have that kind of system to navigate life? I suppose in a way we do. As a person of faith, I certainly have prayed enough asking for guidance and clear direction on decisions.

I’ve also “bent the ear” of close friends when I’m trying to make decisions or determine what to do. I don’t know about YOUR life, but in my OWN? I’m often left thinking, “What just hit me?” after I’ve already encountered the hazard. There was no warning. Don’t for a moment think that I’m not paying attention either. I’m probably hyper-aware as I’m prone to some OCD tendencies. So why do I so often hit the speed bump at full speed (or crush the turtle)?

Distractions

I have some folks in my life with some ADHD goin’ on. It kinda makes sense that they would miss signs. So how does someone who pays great attention to details, get distracted? Basically? I lose my focus. I may be driving along still thinking about:

That I failed to pay attention to the next warning:

So when my car dropped off the uneven pavement on one side, I screamed like a girl. Thank goodness I’m a girl.

Not only do I tend to perseverate – causing me to be distracted, I also tend to “worry something to death”. How many times do we worry about things we cannot change? Take a minute and list all the things you really have no control over. I’ll check back with you in a couple of months.

As a person of faith I try to:

I have to tell ya, though, I blow it again and again. I’m a “worrier”. I’m trying to do better because I’ve come to recognize it IS a big distraction for me. I miss warning signs, I become self-centered, I miss cues about other hurting people, and I step in doggie doo-doo (just laying it out there, folks).

The “Here and Now”

I’m having to learn to live in the “here and now”. I’m not very good at this. Don’t get me wrong… I think we should make plans and be prepared. Be an ant instead of a grasshopper. But I get awfully distracted about worrying about something that hasn’t happened yet. Worse? I worry about something that has already happened and can’t be changed.

I’m working hard to take one day at a time. I’m working hard to focus on the here and now. Example:

I’m fixin’ to walk into class and will be there for 50 minutes. How are my students today? Does anyone seem worried, distracted, tired, or ASLEEP? How can I make personality dispositions FUN? I don’t get any second chances. I don’t want to miss that one student looks shell-shocked, another likely high. (Dude? What have you been smokin’?)

I don’t get that 50 minute time segment back. It can be simplified beyond this, too. I’m trying to take more naps. I need them. I don’t know if it is because I’m “almost 50”, or if it is because I am fatigued from having to speech read and pay attention? I just know that I live for naps. If I have an opportunity to have one, I don’t want to lay there for 27 minutes of my hour available worrying about what I need to do. I’m learning to focus on calm – peace – rest – sleep.

My guess is that if you are reader of this blog, you have challenges of your own. You may be differently-abled or live with chronic illness or pain. Perhaps you are struggling with emotional health. Learning to ignore the distractions will help you focus – help you cope. It isn’t a cure-all. Occasionally you will still be taken by surprise. You are going to see and benefit from far more road signs if you are really paying attention. I hope you will work on it and if you have any tips, comment below! I know I take all the advice I can get!

L. Denise Portis

Why I Rarely Vent (in Person)

Published on August 14, 2015August 14, 2015 by hearingelmo4 Comments

My head is gonna explode. There's a reason I don't vent in person... — My head is gonna explode. There’s a reason I don’t vent in person…

Aren’t I brave to post a picture with no make-up on a “horrible, rotten, no-good day”? I decided last minute to stop in at work on Monday to check my mail box. I forget to do it during the summer when I’m not teaching. Anyway, I ran into a person I know fairly well. I almost ran the other direction because I know her well enough that I didn’t want her to see me with no make-up, flip-flops, and blue jeans. However, since SHE had all that going on too… I decided to let her flag me down instead of pretending I didn’t see her. We exchanged the “how’s your summer going?” questions and visited for a few minutes. We’ve served on various committees together and so when she asked me, “So how are you really doing?” I didn’t hesitate to answer truthfully. Silly me, I thought she wanted to know!

“Well, I have had a bad day. I get super tired of falling on rainy days. Ya know? But the weather for the rest of the week looks great” and I beamed my best smile!

She said (I kid you not), “Yeah, I fell this weekend and broke my friggin’ nail. Just look!” (she sticks her finger in my face for easier viewing). “I just got a manicure too!”

Now the first thing that popped into my head wasn’t nice. So I’m not even going to repeat it on here. My second thought, however, was “this is why I’m not honest to people face-to-face“. Besides… if you don’t live with a chronic illness or disability, you just can’t understand what having a bad day for THAT person really means. (I can’t completely understand YOUR bad day either). It’s not their fault. I chose to believe she was trying to commiserate and help in some way. I “ooo’d and aaaah’d” over her broken, manicured nail, getting madder and madder (but doing a fantastic job of hiding it, I might add!)

After due diligence in bemoaning her broken nail, I turned to leave. Since I had been holding her wrist to get a better look at the nail, I dropped my hand (and her hand) as I turned to walk away. It was then she noticed my arm. “Oh my gosh. What did you do to your arm?”

I turned my arm to look at where she was looking and saw a row of purple and blue bruises. “Oh that,” I said breezily, “yeah, I said I fell, right?” Her eyes got really big, and she whooshed out on an astonished breath, “Well, I’m an ASS, aren’t I?”

I giggled. Not at her.

Ok, yes it was AT her, but her self-condemnation and horrified look were truly priceless. I assured her that all was well, working hard to make sure we went our separate ways with friendship and her self-esteem still intact. After all, I didn’t want her to think that *I* thought she was an a**. Even though I did…

Why We Dodge the “HOW ARE YOU?”

On the short drive home I belly-ached out loud to Milo (new Service Dog). One of the great things about service dogs is their non-judgmental, listening ears. When I’m angry, I tend to cry. Not sad tears either. (Hubby has learned to not “there-there” me when he sees tears because chances are he’s in trouble and not that I’m sad and need a shoulder).

Many people with chronic illness and disabilities lie. Not premeditated lying. It’s more of a self-protective omission of the truth. When your NORMAL is not “normal” for people who do not live with significant health challenges, you do not really have symptom-free days. Instead, you learn to appreciate the good days and try super hard not to dwell on the bad days. You don’t ever answer “how are you?” truthfully. (Unless the person who asks lives it too and really gets it). You don’t want to be a negative Nellie; a sour puss; a stick in the mud; __________________ (fill in the blank).

So you dodge the question, or flat out lie. I had a friend tell me that “stating how my day really is going doesn’t make my day better. It only depresses the other person. Since there isn’t anything they can really DO to make it better, I grab FRIENDSHIP by the collar and don’t let go, insisting my day is going very well if only to talk to a friendly face for a few moments longer”.

Don’t get me wrong… we all need some folks we can be honest with and tell it like it is. For me, it is often God because I figure His shoulders are broad enough. Sometimes I need a flesh-and-blood human face to talk, too. This is why I highly recommend support groups. I rely on the people I have come to know at Fidos For Freedom. We couldn’t be any more different. We struggle with completely different kinds of disabilities and challenges, but each one of us understands why we dread the “how are you?” question. Even virtual support (through the medium of the Internet) can be very therapeutic to people with chronic illness and disabilities.

But… I really want to know! I really want to help!

I have a few people in my life (and I hope that you do, too) who I can be honest with when I’m overwhelmed with a “horrible, rotten, no-good day”. They may ask, “how are you really doing?” and I TELL them. The obvious next question is, “Well, what can I do to help?” Ya know? I’ve really wanted to take people up on this before. I mean… sometimes it may be that I need someone to go shopping with me. Milo is terrific, but there are some things he cannot pick up and some things I really wish I hadn’t dropped to start with! (like glass). Shopping is exhausting for me but a necessary chore.

My son has a “temporary disability” as he fell through the ceiling while in the attic and broke his arm. (The full story is much longer, but I’m not going there today). He is really struggling with doing “normal” things because he has one hand. So I asked him, “what can I do to help?”

Laundry. My son asked me to do his laundry! And do you know, I was almost hysterical with JOY? I love to do laundry! I am ABLE to do laundry! I love pre-treating stains, choosing settings on the washer, and piling things in evenly. I love putting wet clothes into the dryer. And… (OMGosh I’m trembling with excitement I can hardly get it out…) I love folding warm clothes from the dryer. I’m getting goosebumps thinking about the neatly folded piles of “like” clothing. It’s a very normal (and for most people), boring task. However, “son” couldn’t do it. *I* could help.

If you are in a position to help someone who lives with chronic illness, doing something rather ordinary — is EXTRAORDINARY for them.

Loading/unloading the dishwasher

Washing the bedding and re-making the bed

Mowing the lawn

Deep-cleaning a bathroom

I know people with various disabilities who do things to help out others with disabilities. That’s how it should be, right? People… just helping PEOPLE.

Concluding full circle here – VENTING

I have some high maintenance friends. And you know something? I love them. I knew in advance they were high maintenance and I chose to be their friend anyway. I also have some friends who “hold their hand close to their chest”. Heck, if I’m really going to see their “hand”, I almost have to yank them towards me and demand “a real reveal”. I’ve had to learn how to “read” them. I very well may MISS IT sometimes – the clues that tell me that all is not well.

Sometimes people just need to vent. They KNOW you can’t do anything to improve their situation. They KNOW they will have better days (so please? Don’t tell them, “the sun will come out tomorrow”?) They may just need a few moments to tell you like it really is. You say, “How are you?” and they decide to open the dam. It may pour out of them. It may be a trickle of water that you have to give additional encouragement to in order to really break down that barrier.

Let them VENT.

… and then what? I don’t recommend patting them on the shoulder and asking if they feel better. What’s the next step?

It’s two years old now, but I love — absolutely LOVE this advice. <Click here for full article> The highlights and three follow-up (recommended) questions to a “Vent-or” are:

What bothers you the most about the situation?
What is making you the most _______________?
(My favorite) What worries you about this?

This is listening done right. They vent. You follow-up with questions that let them know you were actually listening. You can brain-storm with them options that may help them with some of the things that are frustrating them. You may discover through dialoguing with them, a way that you can easily help them beyond providing a listening ear.

Folks who live with disabilities or chronic illness like being able to reciprocate, too. I am on CLOUD NINE that my son needs me to do his laundry for him right now. I love dog-sitting for my daughter’s dog when she needs to go out of town. There are some things I can do. Let me do them. 🙂

I hope you will look at venting a little differently after reading this. Especially if the venting you listen to is from someone who has significant health challenges. One of my dear friends has a seizure disorder as well as other significant health challenges. She often lets me hear how things are really going because she knows I care. I tell her I will be praying, and she knows I mean it. She immediately asks, “so how can I pray for YOU?” and I know she means it. A praying friend can be HUGE. Sometimes you can do more. I hope you will look for those opportunities. Lysa TerKeurst does a great job blogging about this. Please allow me to share her great article with you: “Don’t Say You’ll Pray for Me“.

Denise Portis

Specificity

Published on July 22, 2015July 22, 2015 by hearingelmo4 Comments

Some posts get a lot of response both publically and privately. Back in March of this year, “When they SHOULD, but They Don’t” posted. In 2015, this post has generated the most “mail”. This tells me that the topic is important. This tells me that this problem exists. This tells me that people with chronic illness, invisible illness or disability, and health challenges struggle with:

Asking for help
Accepting help
Realizing that assistance ≠ diminished independence

My husband and I travelled to see his parents two states away this weekend. I love having Terry all to myself in a car where he can’t get away from my enthusiastic chatter and conversation. Thankfully, the man doesn’t seem to mind that a seatbelt is all that separates him from his talkative wife.

I shared with him how much follow-up email I have received about this post. I know many people who are differently-abled personally. I also “know” many only through “Hearing Elmo”. Why is it so hard for the people in our lives to support us in a healthy, loving way without creating codependency, “IOU mentality”, and decreased self-esteem? I shared with my husband an article I recently read at the Invisible Disabilities Association, on what family members of differently-abled people should know. (You can read it HERE).

My husband, a psychologist who has worked with special populations for 25 years, reminded me of something that I really needed to hear. You see… lately we have not been communicating very well. Yeah, yeah, I know! Hearing loss is a communication disorder, but this isn’t new to us! Once in awhile, our communication breaks down. I get frustrated, he gets defensive, and the dogs choose sides. It’s ugly.

Be Specific or Be Quiet

One of the most common things people say to me about this topic is, “If the shoe were on the other foot, and THEY were differently-abled… I would be supportive and accepting!” In other words, “I’m sure I’d respond to all of this much better because I’m a super hero and they are NOT”.

Now don’t get me wrong! Maybe you WOULD respond more effectively! I believe that circumstances such as dealing with a health challenge can make us more compassionate, empathetic, and helpful to others in the same boat. I tried to point out to a reader that they “could not know how they would respond and support the other person because it isn’t their reality”. They “could not know how hard it is to love and support someone 24/7 that is differently-abled because they are not living that life”. These folks immediately fire back, “Well I LIVE WITH THIS 24/7 so I think I would know how hard it is”. Apples and oranges, my friends! They are both fruits and grow on trees, but are different in every way. Bottom line, if you are differently-abled or live with chronic illness, your perceptions and reality have changed. You cannot know what it would be like to be completely healthy and instead love/support someone who has special challenges.

I can already HEAR picture some of you freaking out about this. Before you send me hate mail though, please remember that I, too, am a person with special challenges, married to someone whose only significant challenge is to lose 20 pounds now that he’s middle-aged. (Hmmm. I may get called out for that comment should hubby read this week’s post).

I’ve already explained that my “captive audience” reminded me of something about good communication because I have slipped into some old habits and was feeling frustrated with him as a result. We need to be specific. Our loved ones are not mind readers. Here are some REAL specifics I have learned in my own communication – all of which we re-visited on this trip since communication has broken down lately.

Instead of:

You need your laundry done? Do it yourself MORON!

You know I love doing laundry. I need you to carry it down the two flights of stairs to the laundry room. Then, when you get home from work, at some point I will need you to carry it all back upstairs.

Instead of:

What? You can’t carry your own plate to the sink? Well I guess I’m making dinner FOR ONE from now on, You MORON!

I don’t mind cleaning up after meals. My Meniere’s disease does not allow me to carry things to the sink very safely. Could you pile your stuff in the sink please?

(This specific instruction garnered the benefit of his carrying MY dishes to the sink, too!)

Instead of:

I can only walk one dog at night. You think I have excess energy? I guess poor Chloe is going to believe she is unloved and definitely UNWALKED. MORON!

Would you walk Chloe with Milo and I tonight? She needs the exercise. You don’t need to go as far as I do, and it will mean a lot to her.

Instead of:

You’re tired of the empty cupboards and fridge? Go get your own groceries, MORON!

(Can you tell my unfiltered, “go to” cut-down is moron? Poor Terry)

I am running on empty this week. Milo is a huge help, but I’m just “done”. Would you go get groceries with me this week? It would really help.

Instead of:

You never help me! (and just to stay consistent… MORON!)

Would you mind helping me with some housework today? My balance is particularly bad. I could dust if you would vacuum?

Specificity helps communication. Generalizations will lead to communication breakdown. It takes practice. You wouldn’t think it would, but it really does. Learn to be specific. You may even have to learn to be specific in how you want your loved ones to back off! A recent example:

Instead of:

Cripes, Terry! I can do this, you know. I’m not totally incapable!

(He was trying to help me get Milo’s leash on and Milo was super excited).

I know Milo is “blowing a gasket” here. But I have to learn to calm him down and give him the proper commands since I’m usually alone with him. He has to learn to settle on MY terms. Thanks for the help, but I’ve got this!

If you need help, be specific. If you can do something yourself, be specific. If you need a listening ear, be specific. If you need a hug, be specific.

Denise Portis

P.S. I’m hoping to launch a series of blog posts over the next year. See HERE for more information. We need guest authors! 🙂

Polygamy and Practice

Published on July 13, 2015July 13, 2015 by hearingelmo8 Comments

Do you know how many times polygamy has cropped up in my conversations? It’s super easy for me to hazard a guess because I have NEVER had a conversation about polygamy. I don’t watch “Sister Wives”, and know very few Mormons (and those I do – do not practice polygamy). So why… WHY would I bring the word up in a chance encounter? *shaking my head at myself*

I’m a creature of habit. I go to the same stores and the same restaurants. I’m super scheduled and my electronic calendar is near and dear to my heart. I’m color-coded. I’m organized.

Therefore, it’s no surprise that I tend to run into the same people at the places I frequent. I have shopped at the same grocery store for almost four years. You tend to run into some of the same people when you frequent a store. When you go everyplace with a service dog, it makes you rather unforgettable, especially with children. It’s no surprise that I see some of the same children in stores who have been curious about and thrilled with Chloe as I shop.

It shouldn’t have surprised me that a little boy I have seen a half a dozen times or more stopped me to ask about my dog. My new partner is Milo, a black shepherd/lab whose appearance is completely different than that of Chloe. Here is a recent photo of both Chloe (retired) and Milo (current). The picture isn’t that great which reminds me I need to work on getting some more “3 musketeers” shots!

This little boy that I see occasionally (whose name I DO NOT know – which embarrasses me as he knows my service dog’s name), looked at me with big eyes and said, “Where is Chloe and WHO IS THAT?” (Ya gotta love kids)

I replied, “Oh, this is my new service dog, Milo. Chloe is retired now and is at home sleeping on the couch”.

He looked very solemn and said, “So she still lives with you?”

“Oh yes“, I said. “She will always live with me. It’s just that Milo is my new partner!”

He was quiet for a second or two and said, “So it’s like you are divorced and Milo is your new service dog?”

I was so astonished by the seemingly change in topic I stuttered out, “Well… ummm…. no, not at all. Chloe and I aren’t divorced. I guess it’s more like polygamy and both dogs live with me now!”

The little guy look TOTALLY CONFUSED, and I glanced up to see the HORRIFIED LOOK on his mother’s face. Ever want to just slap your hand over your mouth? I knew as soon as I said it that it was 1) totally inappropriate, 2) would take the mother all day to explain to her son, and 3) completely “off the wall”.

I made a mess of trying to back peddle (for people with balance disorders can do precious little BACKWARDS), and hurriedly made my way down the next aisle.

I stood in the international food section fussin’ at myself and nearly in tears for using such a poor analogy around a 6-year-old. I determined then and there I needed to PrAcTiCe PrAcTiCe PRACTICE what to say in response to “where’s Chloe and who is THIS?”

Part of Good Advocacy is Practiced Responses

Being a good advocate and representative of “whatever ails ya” means you have good responses when someone asks questions. I have learned the HARD WAY, that these responses need to be rehearsed. When you are taken by surprise by either well-meaning, curious people or rude, snarky trouble-makers, you want to have a measured, helpful reply so that you advocate in a positive and helpful manner. I have found that if I don’t have a “canned response”, I tend to match the tone and demeanor of the person asking. This means that sometimes I am pleasant and in “teacher mode”, with great responses that educate and advocate on behalf of the disability community. However, other times I’m waving my cane in a curmudgeon’s face and informing them in no-uncertain terms how horrible they are.

At Fidos For Freedom, Inc., (where I trained for now – TWO – service dogs), we practice how to respond when encountering access issues. If you have a service dog, it is not a matter of IF you have access issues, rather WHEN you have access issues. It is easy to get flustered. It is easy to get mad. It is easy to say the wrong thing. Practice makes it much easier to respond with something that will actually help you and others like yourself.

Doesn’t it Suck that Many of the Rude Ones are “Kin”?

What is even harder is when the person acting incredulous and skeptical is someone you know well or are even family. I’m lucky that I have a very supportive spouse and adult children. Even so… it is hard to love someone with a chronic condition. Once in awhile, my husband (or kids) do not filter what they are saying, because they, too, are sick and tired of Meniere’s disease. I’m 100% certain my husband has rehearsed responses to commiserate appropriately so that he doesn’t spend the night on the couch.

(Holding an ice pack on my cheek, or head), “I’m so tired of falling and staggering around! What I wouldn’t give for just one day of no vertigo!”

“It must suck, honey!” is the rehearsed response so that “Yeah, I’m getting tired of taking off work to take you to the E.R.” doesn’t slip out.

It can really hurt when someone who knows you better than others “opens their mouth and inserts foot”. I recommend that even support people practice and learn how to deliver sympathy and encouragement.

You Will Still Blow It

Even if you practice measured, helpful responses to personal questions, you are still going to blow it from time to time. A couple of Sundays ago I was ticked off at myself for not responding kindly to someone and was thinking, “Denise! You’ve had this diagnosis for 2 decades! Exactly WHEN is it gonna become HABIT?”

I sit during the worship service. It isn’t because I cannot stand. Folks are surprised when they learn that at work, I stay standing for very long periods of time. I actually MOVE very easily and with very little wobble. It’s standing still that is the problem. My world turns… counter-clockwise when I’m standing still. I love my church. They are very supportive of people who are differently-abled. We have a loop system in the auditorium for people with hearing loss. We have fully accessible bathrooms and classrooms. We have an elevator and a lift for people with mobility issues. In spite of this, I’m forced to sit during the worship service. My church puts the words to the songs on the wall using a projector. We have a beautiful stage and lights as well. The song lyrics are in a multi-media slide show with patterns, colors, movement and lights. Everything is color-coordinated and changes song to song. The freaky OCD person in me is in awe every Sunday. It’s gorgeous! But… I can’t stand. If I do, I’m fighting consciousness. It isn’t a problem, for I don’t mind sitting. I’m comfortable and SAFE. I learned that not everyone understands why I’m sitting, however.

An elderly person came up to me at the beginning of the service and asked me how to access the hearing loop in the auditorium. I removed my cochlear implant and hearing aid and demonstrated how to switch to t-coil. I get this question about once a month and I’m always glad to educate. I love the hearing loop and it has dramatically transformed church for me. I love answering questions to help others access this wonderful technology. So wasn’t I surprised by the encounter, but totally floored by the follow-up question:

“So why are you seated during the music? I’m way older than you and even I can stand!”

I don’t know if it was the environment, the timing, or the unexpectedness of the question, but can I tell you … I really took it wrong? I could FEEL the tension creep up my spine and I was mentally counting to ten and trying to diffuse the explosion about to spew out of my mouth. THIS ONE I hadn’t practiced for. I hadn’t run any scenarios through my head and out through my heart filter to answer a question like this appropriately. So I didn’t.

“Wow. That was really, really mean. We’re done,” I said. The person looked startled, then uncomfortable and walked away. I think the last action was because I’m certain my look was murderous. I mean… I was MAD. (I later apologized).

Folks are gonna take you by surprise once in awhile. You will hear an insensitive comment from someone you weren’t expecting it from and it will just shock you into silence (if you are lucky) or cause you to say something you regret. It is best to be prepared.

Ummm… WHY SHOULD I?

Maybe you are thinking that if people are going to be insensitive and inconsiderate, that “why should I temper what I say in response?”

Since we are on the subject… here are some “canned responses”:

1. You don’t want to sink to their level.

2. You need to be the mature one.

3. Kill ’em with kindness.

4. In the end, you advocate for all of us.

5. Honey attracts more bees than vinegar.

Well.

I happen to love vinegar. I mean… don’t get me started on pickles. There are few things I love more. Let’s be honest though… from someone who is differently-abled to someone who may also live with acquired disability, chronic illness, or invisible issues, “WHY should we be careful in our response?”

(sigh)

Because it’s the RIGHT thing to do. Sucks, don’t it? I can tell you from experience though that it is much better to answer correctly and watch someone else squirm, than to have to apologize for “going off” on someone. Go practice, my friends! You’ll be glad you did!

Denise Portis

Through the Eyes of a Newbie

Published on June 29, 2015June 29, 2015 by hearingelmo5 Comments

Milo Cade - Fidos For Freedom, Inc., Service Dog. — Milo Cade – Fidos For Freedom, Inc., Service Dog.

Many of Hearing Elmo’s readers know that I retired my service dog, Chloe, this year. Since May 1st, she is enjoying retirement and still does some hearing alerts at home. She is happy, spoiled, and we believe well-deserving of all the naps and belly rubs she is currently receiving. I was recently matched with Milo, from Fidos For Freedom, Inc. Milo is a shepherd/lab mix and I am enjoying the process of being partnered with a mobility/balance service dog versus a hearing/balance assistance dog. We determined my primary needs are mitigating issues with Meniere’s disease and not hearing alerts. I love my cochlear implant, and feel like I have adjusted to the world of “hearing again” very well. My balance is, and will continue to be, a major issue. I suppose in a way, this is an introduction of my new partner, Milo.

One thing I have enjoyed is experiencing MY world (work, church, walks, etc.) through the eyes of a newbie. For Milo, everything in MY world is new. He looks at everything in awe. If he isn’t looking in awe, he is sometimes in “investigation mode”.

Is it scary?

Is it freaky?

Is it edible?

Is it alive?

What does Denise think?

At a training session with my trainer a week or so ago, I brought Milo to one of my classes. I had allowed enough time to exit the service dog safely from my car. I had allowed time for a short potty break. (Honestly, Chloe hasn’t been at home long enough for me to get out of the habit of some of these things. I found myself at a potty area recently and realized I didn’t have a dog by my side!). I allowed enough time. Not.

I did not allow time for all the new things my newbie partner was seeing. The grassy area was new. The trees and picnic bench were new. The ramp into the building was new. The automatic door push-button was new. At least… it was new to MILO. For just a brief second, I was mildly annoyed. I had not allowed time for appraising all of these new environments. That was MY bad, not Milo’s. I want my dog to be confident and aware of his surroundings. I was almost late to class, but the time I took “extra” was time worth taking. Newbies need some extra patience from those of us who are veterans to the schedule and environment. We owe it to them. But you know something?

Blowing It BIG!

I really know how to blow it. I mean, I don’t do anything half-way. This isn’t always a good thing. I recently became extremely exasperated with someone relatively new to “hearing again”. I try hard to be a positive advocate for people with disabilities, and chronic and/or invisible illnesses. This blog is, in part, a way that I try to raise awareness and encourage people to talk about tough subjects.

I see this lady about 3 times a month at the grocery store. Over a year ago she saw my CI, asked about it, and eventually had surgery herself. This individual was relatively new to hearing loss. She was still struggling to help the people important to her understand that the CI did not “FIX” her hearing. Instead it was restored to a type of hearing (bionically) and she would still be in environments occasionally where she would need others to understand that she needed to 1) see their face, 2) slow them down, and 3) find a quieter spot. After listening to her for about ten minutes – really distraught about not feeling accepted – I felt myself becoming impatient. We had this conversation before and I felt as if we were “beating a dead horse”. Remorse and shame immediately washed over me. I stuck my finger in my own face and preached, “Really, Denise? Really?” (Y’all are trying to figure out how you stick your own finger in your face, aren’t you?)

As I had (thankfully) kept my mouth shut, I continued to listen and realized she was now apologizing… “I’m sorry I keep bringing this up. I just can’t seem to help them understand that the CI was not a CURE. I’m so frustrated!”

I realized then and there that I needed to put myself in newbie shoes more often and remember how difficult those early years were. Advocating and educating take time. Families and friends do not just wake up overnight and suddenly “get it”.

I told her that I often forget how hard those early years were, and that she had to keep at it… eventually some of it would start to sink in for her family members.

As a person of faith, I believe everything happens for a reason. We may not always like the purpose behind God allowing something to happen, but there is always a reason. I’m also (gulp) old enough now to know that we may not EVER completely understand why something happened this side of Heaven. I have ALWAYS felt like that the acquired disabilities I have were allowed so that I could help others… or at least try to do so. I blow it. I blow it BIG. However, I think those of us that have lived the life a few years, owe it to the newbies in our lives, to lovingly coach, encourage, cheerlead, advise, and HUG often.

You are going to have newbies in YOUR life. Unless you are isolating yourself, you will have folks new to whatever “ails ya”. People will look to you for understanding and advice. You will be able to empathize much better than their doctor, their families, and their co-workers. Of all people – YOU get it.

Are you looking for a way to invest your life in someone with similar challenges? There are opportunities everywhere. You simply need to know where to look. Urban areas often have face-to-face support groups for various illnesses and disabilities. There are numerous online support networks, discussion forums, and peer supports. Many doctor’s offices and rehabilitation specialists have contacts to support personnel. Invest yourself in the life of a newbie. Remind yourself while investing how difficult those first years were! It shouldn’t surprise you to discover, sometimes by accident, the student becomes the teacher. Always, always be teachable.

Denise Portis

Self-Talk

Published on June 15, 2015June 15, 2015 by hearingelmo4 Comments

Self-talk. Chances are you have been using self-talk since you were a child. As a matter of fact, developmental psychologists tells us that self-talk begins in middle childhood, ages 6 to 11-years-old (Arnett, 2013). Perhaps that is why many folks think that simply “talking to yourself” out loud is the same thing as self-talk. Children often “play out loud”, adding sound effects, conversations, and even lengthy monologue within imaginary play. This is not self-talk. Self-talk is really just your inner voice. It often reflects your conscious and unconscious thoughts, beliefs, and assumptions (Psych Central, 2015).

Self-talk CAN be out loud… don’t get me wrong. One of my favorite things to practically shout when I use self-talk, is “Girl? I REJECT THAT!” This is said out loud, with southern accent, hand on hip, and oozing with attitude. (Are you picturing it? If you know me, you likely have even heard me say it).

Self-talk is also studied in Sport Psychology. As a matter of fact, if you do some searching online, many athletes have often used quotes that incorporate the use of self-talk. We ALL use self-talk, however. Whitbourne (2013), explained “Psychologists have identified one important type of 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).

This is why sometimes internally and oft-times out loud, we say, “Well. That was stupid”. As a matter of fact, much of our self-talk as adults is negative. Some of us may be parroting things we actually hear others say. However, most of the negative self-talk comes from the heart of pessimism and self-deprecation. Why? Why are we so hard on ourselves?

People who live with chronic illness, or invisible (or visible) disabilities often have negative self-talk. Statistics tell us we don’t really engage in negative self-talk more than adults who do not struggle with these issues, but perhaps the source is different. Frustration tends to be a significant source of negative self-talk for the differently-abled.

Perhaps you are trying to discover how to do something independently. Maybe your are coming to terms with having to do something differently. Here are some things I have found helpful when I find frustration is spawning negative self-talk:

1. Identify it. Perhaps this is why the first phrase out of mouth is often “Girl? I REJECT THAT”. I identify that I am engaging in negative self-talk. See it (or hear it). Call it what it is. Now that you recognize it:

2. Change your spin on it. See if you can’t put a positive spin on it. Perhaps your self-talk has recognized something that you need to pay attention to but you need to say it like you are talking to your best friend. Be your own best friend. We wouldn’t say, “Geesh, that was dumb”. Try re-phrasing it. “Well I’m smarter than this. How can I make sure this doesn’t happen again?”

A great example of this happened to me just last week. I took a really hard fall between my front door and the grass to “potty the dogs”. It was late, and pretty dark outside. I was in a hurry. My pillow was calling out to me and I wanted to reply face-to-face. I left the house without my cane. I was only walking 10 yards. What could happen?

I have 6 bruises and a small cut on my arm to show how wonderfully intelligent that choice was. So laying there in the grass with “mother earth” in my mouth, ear, and eyes, my first thought was:

“Dang. You are so graceful”.

Yeah. I speak fluent sarcasm.

My second thought was, “Geesh, that was stupid”. I’m a bit of a motor-mouth so I’m pretty sure the conversation went on a little longer, discussing how many brain cells I have, could I be any lazier for not taking 10 seconds to grab the cane?, and competing very hard to convince all living things listening that I deserve my title of Accident Prone Queen.

Because I’ve had so much practice at this, I immediately identified what was happening. Putting a new spin on it meant I could say, “Well this is why you should take 10 seconds to grab the cane!” Folks, I was WRONG to leave the house without my cane. But finding a middle-ground and re-phrasing the self-talk helped me be just a little more kind to myself. We need to take the time to be kind to ourselves.

3. Flexible expectations. No one knows you like YOU know you. If you have lived with invisible illness or disability for any length of time at all, you know what your own limitations are.

Unlike some of my cochlear implant friends, I still do not hear music very well, nor enjoy what I hear. My iTunes account could be deactivated. Does this mean music isn’t a part of my life? Absolutely not. I sing 80’s tunes at the top of my lungs when home alone.

Because of positional vertigo, I cannot use exercise equipment like the cross trainer (my husband’s favorite), stair-climber, or anything that moves my position vertically. Does this mean I cannot exercise? No. I can use a treadmill and I can walk. The latter I do twice a day.

The doctoral program I am in is designed to push you through in two years. I will be done in 3.5 years. And you know what? That is OK. This is the pace I can do successfully and complete my schooling. I can be flexible in my expectations!

When all else fails, tell yourself to shut up. You may not say, “Girl? I REJECT THAT!”, but don’t be afraid to tell yourself to zip it. It may even be helpful to say it out loud. It works for me! In the end, you can actually work self-talk to your advantage. Learn to cheerlead yourself. Most of us look great with poms-poms.

Arnett, J. (2013). Developmental Psychology: A cultural approach (1st ed.). Upper Saddle River, NJ: Pearson Education, Inc.

Psych Central (2015). Challenging negative self-talk. Retrieved June 15, 2015, from http://psychcentral.com/lib/challenging-negative-self-talk/

Whitbourne, S. K. (2013). Make your self-talk work for you. Psychology Today. Retrieved June 15, 2015, from https://www.psychologytoday.com/blog/fulfillment-any-age/201309/make-your-self-talk-work-you

Denise Portis

The Two Sides of Me

Published on May 23, 2015May 23, 2015 by hearingelmo6 Comments

I work as an adjunct professor at a local community college. This year I was thrilled to participate on the “Year of Social Justice” committee and to head up one of the major activities for the year – “disABILITY for a Day”. The students were given 5 disabilities to choose from, and were to experience a day of class rotation with the chosen disability. We limited the options because we did not want students (for example) choosing a mental illness and inadvertently feeding the stigma of various diagnosis. The students were to then answer 10 response questions and write an essay about the experience; or, create a video segment on their experience. If a student had a disability or invisible illness, they could do the activity “as their norm” or choose something different.

I received a number of finished products from some of my own students, some of whom I had no idea had a disability or invisible illness, and a few that I did. With permission, I am sharing part of that response (and leaving out names and identifiable descriptions).

An Invisible Influence

While I consider myself a person with invisible disabilities (profound hearing loss/hearing again bionically, and Meniere’s disease), I have worked very hard to make the invisible – VISIBLE. I learned in my late 20’s, that it served in my favor for people to recognize that I did not hear normally nor move normally. I do this by “BLINGing up” my cochlear implant, using a brightly-colored cane, and going about my daily life with a service dog by my side.

Although I have “been out of the closet” for years, there are more subtle things that I do not even realize are an influence for others who are struggling. I’m open about my challenges and actually have to work hard at not using too many personal illustrations throughout my lectures. (It’s one thing to educate your students about the disability community, and another to overwhelm them with details).

When I stumble, I usually say, “Woah!” and then grin super big and ask “would you like to see the rest of the dance?” I giggle at myself. Genuine, embarrassing/snorting giggles. If I turn too quickly towards the white board and slam into it, cheek first, I would have a spiffy comeback sometimes such as “ouch… up close and personal”. At times I would simply say, “Crap. It’s gonna be one of those days”. My students knew when I was having a particularly bad day because I would sit during most of the class, or simply announce that I was going to limit motion today (so please come to ME-smile).

One day in class, I reached to pick up a paper clip that I did NOT want Chloe to retrieve and fell on my face to the floor. Several students were there in seconds lending me a hand to resume my vertical stance. After hearing a couple of times, “Geez, professor. Ask for help”, I learned that I could ask for assistance when my service dog could not do so safely, and no one minded at all! I work hard at being transparent. I simply didn’t realize how well students with disabilities could see right through some of the “stuff” I used to advocate in a positive way.

I had a student this semester with visible disabilities, hidden and covered up to make them as invisible as possible. The student sat on the front row and wore a hoodie the first couple of weeks of class. It hid her face and her torso. I saw a transformation in this student in only four months. It wasn’t until the “disABILITY for a Day” assignments were turned in that I understood the why behind the change.

By the end of the semester, the hoodie was gone, she sported sparkly jewelry that actually drew attention to some of her challenges. She smiled (and golly did she have the most beautiful smile). She talked to everyone in her vicinity in the classroom. I saw students come up and hug her at the end of the semester and exchange phone numbers. The following is part of what she shared:

The Two Sides of Me

I always tried to hide my disability. In public I would cover up as much of me as possible. My face could be seen and I’d smile when someone looked at me. I would never allow them to look to long. In reality, I was broken, scared and even scarred. I have a professor who embraces all that she is, disabilities and all. I’ve seen her put other people’s unease at rest. She cracks up at herself. When she is having a bad day, she says so but continues to do her thing and teach. She never makes us feel sorry for her on her bad days. I’m not sure how she does it because one thing I hate is pity. Maybe it is because she is real when she is having a good day or bad day. I’ve heard her use the words “differently-abled”. She says she borrows it from a lady she knows with incredible courage and strength who lives with significant challenges. I don’t know why I’m 19 and only now figuring out that I’m differently-abled and not disabled. I have now learned to tell my family or close friends that I’m in pain or having a bad day. I don’t let it drag me down though. I have really good days, too. I’ve even learned how to put on make-up with one hand. Yay, me! There are two sides of me, and I like both sides.

I Get it Wrong – So Will You

I don’t share any of this to “toot my own horn”. As a matter of fact, I’ve made so many mistakes. For example, I had a student ask me this last semester, “Are you OK, today?” “Sure,” I replied with false sincerity. “Bull****”, they replied.

Busted.

I share this post today for one reason only. You often aren’t aware of your own influence.

Do you have a tough life? Be genuine, but live as if you are being watched. Be real, be transparent, but remember that someone somewhere is taking notes.

“Denise, you have no freaking idea what it is like. You have plenty of support. You have a job. You have friends”.

Yes. I hear from disgruntled readers from time to time that I cannot understand what it is like to experience the hardships they face. They are right. Their challenges are not my own. I know that I do NOT always have good support and feel alone. I have a job, but it is really hard to go to work some days. I have friends, but only a few that I could actually say, “please help me”. I don’t want anyone to ever think that I do it right all the time. If I was perfectly at ease with who I am and comfortable in my own skin, I wouldn’t be seeing a counselor twice a month. I have major depressive disorder and it is very closely linked with my disabilities. I do not want anyone to think I do not struggle – for I do. My motto is “I have disabilities; my disabilities do not have me”.

Live your life – that’s right, the one that is often TOUGH – as if someone was watching.

Someone is.

Denise Portis

Tree Hugger

Published on April 13, 2015April 13, 2015 by hearingelmo3 Comments

The weather is finally feeling “Spring like”. The trees are all budding out and blooms galore, decorate my neighborhood. It ain’t all good. *achoooo* – but allergies seem a small price to pay for such pretty walking weather.

A couple of days ago, I ventured out of my immediate neighborhood and down a nearby walking trail. I’ve posted about beavers and bullfrogs in other posts as the path stretches along the perimeter of a small pond. At “the bend in the path” where the trail takes a sharp right turn, a huge tree was cut down. This was supposedly done to insure the path remained semi-straight. When I first saw it last year after this section of the trail was finished, I grieved a little seeing that this huge tree was chopped down and for the apparent reason it was hauled away. I haven’t been down this path in months and months. When I got closer to the remains of this giant, I looked for the scarred stump. I was surprised at what I saw. Every which way, new growth and small branches, sprouted from the stump.

I almost became a “tree hugger“. Not in the traditional “activist” sense, but I was so excited to see that it had persevered! I even took a few steps off the path to see how to approach for a hug. Seeing no great way to latch on and SQUEEZE, I instead reached out and calmly high five’d a small branch closest to me. I stood and silently celebrated the fact that this tree was still alive, determined to continue in spite of being chopped down!

Have You Felt the Woodsman’s Axe?

I turn 49 this year. Honestly, growing older doesn’t bother me in the least. Yet, because I have acquired disabilities, I have to admit that where I am is NOT where I thought I’d be. Don’t get wrong.

I feel good about me. I still have goals. I strive to make a difference. I love what I do. I have good days and bad days. There have been days I have really felt cut down.

AXED.

For many with acquired disability, chronic illness or invisible (or visible) conditions, much energy and focus is geared towards being independent. We don’t want to be a “bother” or put people out. I stopped trying to “fit in” a long time ago. I don’t hear normally. I don’t walk or stand normally. As I have become comfortable in my own skin, others have learned to accept me just the way I am as well.

But sometimes? Well, sometimes someone comes by with a wicked, sharp axe and hacks away at me, chipping away at who I am. Do you know what sucks? Sometimes the woodsman is someone I know well. Do you have people in your life who tell you “for your own good” to suck it up? “If you didn’t go around making a big deal about your disabilities, you would fit in better!” “Well aren’t you the DRAMA QUEEN?” “I’d never know something was wrong with you if you didn’t go around with a service dog!” (As if it never occurred to them I’m independent BECAUSE of the service dog).

There will be times we feel “cut down” because it is JUST ONE THING AFTER ANOTHER. I have some friends (those I call family, really) who have significant challenges. A few of them have really had a tough year. One took a significant fall in a store and is STILL recovering as the injury fall out was compounded by her MS. I have another friend with MS who is a stroke survivor. Her husband is now dealing with significant health issues. A young woman I got to know through Fidos For Freedom (who also writes) has a terminal illness and things seemed to go from bad to worse for her this year. These warriors have been chopped away.

Yet people with disabilities and chronic illness are stubborn. We persevere. If anyone “keeps on keeping’ on” it’s us! There is not any person with ANY challenge that cannot explode with new growth in the Spring. Winter is harsh. Axes are sharp. Bad stuff happens. But friends? Life isn’t over. Good can come from this.

Spring is here. Have you had a tough Winter? Did someone take an axe to you? You still matter. You can still make a difference. You are important. It’s Spring. Time to bust out in blooms or branch out in new growth. Don’t make me come fertilize you. 🙂

You meant evil against me, but God meant it for good in order to bring about this present result. Genesis 50:20 (NASB)

Denise Portis

Embracing It!

Published on March 31, 2015April 1, 2015 by hearingelmo8 Comments

"So... tell me the truth. How does this look?" (Terry) "Baby? You are rockin' that helmet!" — “So… tell me the truth. How does this look?” (Terry) “Baby? You are rockin’ that helmet!”

I believe that there are very legitimate reasons for people who choose to keep invisible disabilities invisible. I respect their choice and their reasons for doing so. In many circumstances, it makes “good sense” and isn’t at all about vanity or shame.

I am “all out there” for lack of a better way to put it. In my profession, in my life, in the community service arenas I’m involved in, and for personal safety reasons, making my invisible disabilities – visible is the right thing to do.

I wear bling on my implant. I think it is fun. It puts a smile on my face. I’m so SO thrilled to be hearing again. The progression of my hearing loss took 12 painful years. I was completely deaf for almost two, silently researching and investigating cochlear implants. I’m so proud to be hearing again. Some say I’m flaunting it. Ummm…

YEAH.

If you do not want to bring attention to disabilities, do not ever choose to be partnered with a service dog. Even though our dogs are taught to be nearly invisible (and don’t you know folks are always startled when I get up to leave restaurants because they had no clue my dog was there?), when you walk through a store or into a doctor’s office, your service dog will bring attention to the fact that “something is different about you”. It has been a very long time since working dogs were only trained to be guide dogs. There are diabetic alert dogs, seizure alert dogs, autism dogs, PTSD service dogs, mobility assist dogs, balance assist dogs, alzheimer assist dogs, hearing assistance dogs, and the list goes on! My service dog makes me more independent. I don’t have to ask for help nearly as often. I don’t miss things (sounds my CI won’t pick up), and I’m confident and more safe. But choosing to have a service dog will bring attention to you.

When my Meniere’s disease worsened, I finally realized that 3-5 falls a week were too many. When I have my cane, I stumble maybe 3-4 times a week, but rarely go all the way down. I average only 2-3 falls a month now. I have three canes. They are bright, bold, and beautiful. I don’t try to hide that I carry a cane with me.

I love to be outside. Perhaps it’s the “farm girl” in me, but I love to be outside and love to walk. Just because I have a balance disorder does not mean that I am going to stop walking. Yet… I seemed to have trouble doing it safely. Even with cane and service dog, I was still taking tumbles when the roads or sidewalks were bad. Winter is my favorite season. I love snow, love ice, love “visible breath” in the air… but I have had some bad winters, 3 years in a row. As a matter of fact, when perusing my medical records with my neurologist, I was averaging 2 concussions each year, usually in Winter months. My last mild concussion was March 8th. I have a follow up with my neuro the first week of May. At the last appointment, he said, “You know. You need a helmet for when you walk!”

I laughed and said, “all my friends tell me I need to be wrapped in bubble wrap or need to wear a helmet.”

He looked at me eye-ball to eye-ball and said, “You don’t understand. I’m being serious. You CANNOT continue having concussions”.

Oh.

OH.

NO FREAKING WAY!

I sat there a little stunned for a minute but then began to consider the possibilities. I’m not afraid of what people think. I don’t care about what is fashionable – heck I consider myself a “disability-advocate fashion expert”. But could I embrace a helmet for walking when road and sidewalk conditions were bad?

I decided that yes… Yes, I could!

So I started researching, (cuz, yeah, that’s what I do) and found the helmet I wanted. I was crazy ecstatic that it is called a … “Brainsaver“! Ain’t it great? *BEAMS*

Triple 8 Brainsaver Rubber helmet with Liner in Rasta Yellow

I blinged up the helmet with some of my favorite stickers, (I’m a nut for daisies), and now I’m all set for walking. I even fixed the liner where my cochlear implant magnet had a little place to “rest” inside so it would not get pushed off.

I realize my approach to MY LIFE may not work for you. However, I love embracing who I am and holding my head high. I want to be an example to others, but I certainly know and understand that it is “different strokes for different folks”.

I hope I can report this time next year that I haven’t sustained any new concussions. Yay for me, and yay for neurologists who push to get their patients to take their brains seriously.

Denise Portis

How Can I Redefine Me?

Published on March 25, 2015March 25, 2015 by hearingelmo8 Comments

I stopped looking at myself as “disabled” a long time ago. I am, however, quite comfortable with being a person with disabilities. A friend, fellow-client at Fidos For Freedom, Inc., and blogger, was the first person I ever heard use the words, “differently abled”.

I have to tell you that sometimes I’m really feeling my disabilities. It can make me discouraged and frustrated. So many of us who live with disabilities or chronic illnesses often gripe, “I’d like just ONE DAY of feeling normal”.

I’ve become very comfortable with being a “hearing again”, cochlear implant recipient and “late-deafened” (without my technology). I’ve even grown accustomed to having a vestibular disorder (Meniere’s disease). I use a cane, have a service dog, and bedazzle my cochlear implant with some amount of pride and transparency.

One thing I’m not OK with is concussions. I’ve had a lot. I was even told I had “post-concussive syndrome” after a moderate concussion in 2013. “You know… like football players have.” But…

I don’t play football.

My neurologist had me do ten weeks of vestibular rehab. This was actually a fantastic experience and I learned all kinds of tricks, most importantly how to fall safely – cuz I’m going to fall. Sure, I learned all the great things to minimize the possibility of falling, but I will take some tumbles. So I learned how to unlock my knees and SIT (albeit without any grace) to avoid falls. In spite of this, stuff just happens. And you know what? I get mad.

March 8

Take March 8th for example. There was some ice and lingering snow everywhere. I prepared to walk – which means I had my no-slip boots on, my tripod cane, and service dog (who is off vest but heels like the pro she is). I bundled up and made sure my charged cell phone is in a buttoned down pocket. I don’t use my cell phone while walking. No ear buds or attachments either – No listening to music. I pay attention when I walk. (Well, I also talk to my dog but that was the topic of another post).

So when I crossed a street and fell backwards on the ice I actually felt MAD on the way down. I had taken all these precautions! The back of my head actually BOUNCED on the road. Right before I blacked out I thought…

THIS SUCKS.

I wasn’t out very long (I rarely am). I suffered with a headache for 4 days and made an appointment with my neurologist. (Follow up in May)

I remember thinking after texting my husband and making my way the rest of the way home, that I do not like being this person. I don’t like being the fall guy (get it?). By the time I walked the 2 blocks towards home, Terry met me and I sat on the porch for a good cry. After eliminating some of that tension (and freaking my husband out), I sat there to think (and yes, hold ice on my head). I kept thinking, “This isn’t who I am. I am not the walking, talking concussion waiting to happen. I have GOT to get a handle on this.” I needed to redefine myself. I’m NOT a fall guy. I’m a very careful person who sometimes sits quickly. I sit when I’m lucky… and when I’m not that’s OK. I have plan for that, too. I’m thinking a hockey helmet when the roads and walks are bad. Imagine how I can bedazzle THAT.

Your Thoughts Matter

Two hours before my fall, the pastor of my church (Weem’s Creek) spoke about courageous faith. Do you know that people with disabilities and chronic illness are some of the most courageous people I know? Here are some of his main points. If you aren’t a person of faith, read on anyway. This can easily pertain to anyone. If you are a person of faith you may be like me and think, “Well why have I never seen this before?”

1. To live a courageous faith, we must cultivate a habit of thinking thoughts that are from God. Instead of focusing on not thinking wrong thoughts, we need to focus on thinking right thoughts.

2. We can’t always control the thoughts we have, but we can control the thoughts we hold. We need to learn to hold the thoughts that are true, noble and excellent… those from God.

3. Meditate on God’s Word, not on our misery.

I think ATTITUDE is the real disability. If you can change your attitude, you will never feel disabled. Change your attitude – and that new attitude will CHANGE YOU.

I think of it as redefining me – redefining what having a disability means. My focus is on what I can do. I pour energy into discovering how to do things that I want to do – perhaps differently (using canine, technology, or assistance). This keeps our disabilities from defining US.

Be careful to acknowledge that everyone has a personal “definition”. Just because you may have a hearing loss too, doesn’t mean we define who we are the same. Being in control of our own definition (even if we need a necessary “redefine”), also helps others see us how we see ourselves.

It may take some work. I have a colleague at work who constantly tries to “help”. I finally told her one day, “watch how I do things WITHOUT your assistance”. That shut her up, made her watch… and don’t you know she learned so much? She told me later she just assumed I needed help. Having a disability does not mean you are “not able”. Most of us find very unique ways to be VERY abled.

Are you at a point in your life where you need a little redefining? Perhaps you have believed some of the “hype” about what you cannot do because of your diagnosis. Redefine yourself and hopefully change both your attitude and how others see you.

L. Denise Portis