Retiring My Service Dog

By request, I am transferring a copy of this to “Hearing Elmo”.

Almost "11-year-old" ChloeAlmost “11-year-old” Chloe

Dear Chloe,

I started asking questions of other veteran teams about a year ago. I started to notice some things about your energy level throughout the day. You were always great about taking naps when the time was available to do so. It helped keep your tail wagging and enabled you to always be on your toes when I needed you. Lower energy levels coupled with some obvious pain when your packmate, Tyco, hit your back clued us in that something else was up. I noticed that if someone reached down to pet you with heavy hand you’d shy away or even yelp. Your beloved vet verified you had developed arthritis in your spine. We tried a variety of helps and eventually found something that didn’t make you walk around like a zombie but kept your pain at bay. I tried to ignore what my heart was telling me. I’d deliberately think of other things; things like those early years.

Alerting to my cell phone jingleAlerting to my cell phone jingle

Do you remember?

… when you first learned to alert to my cell phone ringing? We had practiced all day. That evening, you calmly lay by the tub while I indulged in a bubble bath. Evidently my phone rang, because the next thing I knew both you and the phone were in the tub with me. I guess all those bubbles did look like a solid surface.

Do you remember?

… when I learned awfully darn quickly to carefully search through the laundry basket before lifting it up if you were doing a PERFECT POINT towards the hidden cat in the warm, dry clothes?

Do you remember?

… when you came running in the office and popped me in the chest – something not at all allowed? I corrected you and made you lay down and you hopped right back up and popped me in the chest again. So I followed you – down the stairs and into the laundry room where a fire had started. Right as I entered the laundry room, the smoke alarm went off. You were more reliable than the smoke alarm.

Do you remember?

… flying all over the country speaking at various conventions and conferences for the Hearing Loss Association of America? You were always such a great ambassador for service dogs and for Fidos For Freedom, Inc. You accompanied me to speak at a Cochlear America’s convention. It didn’t matter if we were speaking on Capitol Hill, or a local chapter of people with hearing loss, you were a friendly, hard-working service dog wherever we went.

Do you remember?

… being on television because we were kicked out of the Francis Scott Key Mall in Frederick, in spite of your good looks? We couldn’t convince security that you were a service dog and that it was a violation of the ADA to not allow the service dog that helped me be independent into the mall with me. Mall management apologized, we did a training, and your mug was in newspapers and video feeds everywhere. What a great ambassador you are!

Do you remember?

… when my balance disorder become much worse and I cried myself to sleep almost every night? You’d lick my face and snuggle close and were simply “there” for me.

Do you remember?

… when I noticed a student struggling and asked to meet with them after class? We all sat down and I asked “Is everything, OK?” You stood up and walked over and put your chin on their knee. The floodgates opened and we discovered the tragic circumstances this young man was trying to deal with on his own and were able to get him the help he needed. You were always so good at reaching out to students in need.

Always so happy in stores...Always so happy in stores…

Do you remember?

… how every store employee in all the stores we frequent, eventually learned your name and had to say hello to you? You’d bow and then wag your tail. Oh my goodness, all the items you’ve picked up for me over the years! I have grown so accustomed to not having to ask people for help.

Do you remember?

… running home to bark at the door for dad after I slipped and rolled down the hill and hit a tree? We thought I had also broken my ankle, but it was only sprained. You went all that way back to the house by yourself and got help. You didn’t complain that I had to use a walker for 5 weeks.

Do you remember?

… all the trainings at Fidos For Freedom? All the DEMOS, information booths, and community awareness activities? Girl? You shine.

Finally brave enough to do stairs...Finally brave enough to do stairs…

Do you remember?

… when I was finally brave enough to try stairs? If a national park like Harper’s Ferry did not have elevators, walking paths were impossible for me. You allowed me to hike again. Thank you.

all the re-certification tests we've done together! Wow!all the re-certification tests we’ve done together! Wow!

Do you remember?

… all the re-certification tests we’ve done? You sailed through your requirements each year while I sweat out the written part of the test. Oh for your calm, hound dog!

Do you remember?

… being the topic of NUMEROUS posts on Hearing Elmo, my now fourteen-year-old blog for people with acquired disabilities?

Do you know how many lives you have touched? What a difference you’ve made in my life, and in the life of others!

Do you know how much I love you? I love you enough to let you retire even though I miss you desperately when I go to work on the days you are now staying home. I love you enough to let you rest, and play, and be a beloved pet. I love you enough to support you in your second career and let you be the therapy dog you’ve always wanted to be. I love you enough to phase you out of donning your vest each morning. I love you enough that I miss having you by my side 24/7, but love you enough to know you are sleeping and resting at home – waiting for me to come home so that you can cover me with Chloe kisses.

Thank you for being my partner, Chloe. You have given me independence and confidence to help me realize my dreams and to be involved in the disability community. Thank you, for loving me unconditionally and teaching me to do the same. Enjoy retirement, my red-headed sweetheart. You deserve it!

Your partner,

Denise

Tree Hugger

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2015-04-11 19.08.33

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

©2015 Personal Hearing Loss Journal

Embracing It!

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"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

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

© 2015 Personal Hearing Loss Journal

How Can I Redefine Me?

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redefine

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.

redefine4

 

L. Denise Portis

© 2015 Personal Hearing Loss Journal

 

When They SHOULD… but they DON’T

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support

Do you know the #1 topic of emails to Hearing Elmo (or face-to-face for those of you who know me personally) is support or the lack thereof? I have not met a single person with acquired disability, chronic illness, or invisible condition that took on their “new normal” by choice. We need support.

People need other people. I don’t care if you are an introvert and “loner”, or a gregarious, extrovert. All of us need human connections to some degree. I hypothesize that those of us who live with acquired disability, chronic illness, or other invisible condition may need solid, supportive relationships even more than those who do not face daily challenges. Coping is TOUGH stuff, and geesh… don’t I hate we don’t burn calories for all the work we put into COPING? In psychology,  we have a special term for how important our relationships are to adjustment – psychosocial adaptation. Bishop (2005) explains this better than I could: Psychosocial adaptation “may be conceived as a process of responding to the functional, psychological, and social changes that occur with the onset and experience of living with a disability, chronic illness, or associated treatments” (p. 6). There is a ridiculous amount of research on how important relationships are to an individual’s psychosocial adaptation. Intimate relationships are imperative to the quality of life for individuals who are differently-abled. All very interesting STUFF, in my humble opinion, but not at all the goal of or intended topic of this post.

Intimate Relationships

When we hear the word “intimate” we may think of sexual expression. Maybe we think of fancy-smancy underwear. (So aren’t “we” the weird ones?). Intimate relationships are interpersonal relationships that are physically OR emotionally intimate. This means that we can have close friends or family members who have an intimate personal relationship with us in that they know us very well. We have let down our guards at some point and shared things with them that others have no clue about nor care. Yes, intimacy is often physical as well, and those of us who have a physically intimate partner in a spouse or significant other, count it a major blessing to also be a friend to this individual.

Our expectation of our intimate relationships is “through thick and thin” (and I don’t mean WEIGHT). We expect these folks to love us on our good days and our bad days. We know we can belly-ache to them and they won’t think less of us. For those of us who took traditional vows, we put a lot of faith in “till death do us part”. These folks know us – and love us anyway.

When acquired disability or chronic illness enters a life unexpectedly, we rest in the knowledge that our spouse or significant other, and intimate connections with friends and family members will strengthen us and help us adapt. We have this HOPE and expectation, yet so many share with me that they were let down by someone they had counted on to BE THERE for them. Some of you have even had to deal with broken relationships. Others may have partners and friendships that have stuck like super-glue, but you cannot help but feel as if you are a burden and that these folks feel “stuck” with you.

Perhaps someone shared with you that they get tired of how tired you are. Maybe they shared or insinuated that life with you sure is HARD. As if things weren’t hard enough, someone you depend on is tired of your diagnosis too? Thanks so much for that…

I know. Not a single person reading this post hasn’t at some point wished they could have just ONE day of normalcy. “If I could just have 24 hours of normal, it would re-set my gripe-o-meter box”, shared a long-time reader. Yup. I get that! So for someone in our intimate circle to complain that they are tired of all that WE are tired of? It’s enough to make you want to spit. Or hit someone. Or SPIT while HITTING someone…

So what do you do when you realize that those who support you are having trouble supporting you? I have three tidbits to share.

1. If the Shoe Were On the Other Foot

Please don’t lash out and tell your significant bozos (cuz at the point you are mad at them for their lack of support means they have morphed from close relationships to close BOZOS), that if things were “the other way around” you would TOTALLY be there for them – ALWAYS.

This, my friends, is impossible to prove. YOU are the one dealing with a significant, life-changing diagnosis. We don’t know how we would react to “the shoe being on the other foot”. Criticizing and attacking another by insisting we would support and behave differently is not fair, nor is it justified. There are numerous studies that support that stress and anxiety can be vicarious experiences by those who support people who are struggling.

I believe one of the very best things we can do for those who support us is to acknowledge up front that WE KNOW THIS IS HARD ON THEM TOO.

2. Engage in Active Listening

All relationships benefit from active listening. Active listening was made popular by psychologist, Carl Rogers, in the 50’s. Many different counseling approaches now incorporate active listening to engage in good communication. One of the best descriptions of active listening that I’ve read can be found HERE. It is five WONDERFUL pages of all that is Active Listening. So I’m not going to take the time to explain it here and instead am giving you a “homework assignment” <wink>.

3. Yes, They Should. But… They Don’t

I cannot boast of 100% supportive relationships, nor brag that I’ve handled my own acquired disabilities with grace and diplomacy. Even though I’m in a “good place” right now with numerous supportive relationships, I have been disappointed by some of my relationships, and have even lost some folks along the way.

It hurts.

The biggest mistake one can make in shouldering all that encompasses living with significant challenges, is trying to do it alone. You are not alone.

For one thing, you are reading THIS. I care.

The Internet insures that we are NOT alone. The Internet is accessible to even those with significant challenges. If your intimate relationships and friendships have let you down, please know that you need others. Find them.

Places you can find support:

1. The newspaper: Many list various support groups and networks available for numerous types of challenges and health issues.

2. Churches: Many have support groups and networks available to both members and non-members.

3. Libraries: Many have community services bulletin boards (both physical and on-site, as well as electronic) that list numerous support groups.

4. Online forums: One only has to “Google” their diagnosis to find numerous avenues of support online. One great searchable database can be found HERE.

5. National non-profit and for-profit organizations: Most diagnosis also have organizations that provide education, advocacy, and support at the local, state, and national levels. Search the Internet for organizations that provide resources for your specific population. Many have support networks as well.

6. FaceBook and other Social Media Outlets: You’d be surprised what support resources are available on FaceBook. Many are closed groups as well as have confidentiality tenants of membership.

7. Start your own: I’m not a big fan of “wiki” anything (I suppose it is the teacher in me), but I have to admit, WikiHow did this up right. Check it out HERE.

Cut ‘Em Some Slack

Finally, I’d be a poor advocate if I didn’t give you heads up that people are going to disappoint you. Forgive them.

You are going to have a really bad day and need all kinds of support, practically draining those around you DRY. Dehydrated people can lash out. Forgive them.

You will struggle with having to live your life yet another day – so very tired of it all. Someone will point this out. Mock you. Complain about you. Forgive them.

Someone will try really hard to support you and come up short. Their personality or own needs simply do not allow them to be exactly what you need them to be. Forgive them – and support THEM.

You are going to have the kind of day where you are just done with EVERYONE. You burn your bridges, isolate yourself, and find yourself very, very alone. Forgive yourself. And rebuild.

Denise Portis

©2015 Personal Hearing Loss Journal

Bishop, M. (2005). Quality of Life and Psychosocial Adaptation to Chronic Illness and Acquired Disability: A Conceptual and Theoretical Synthesis. Journal Of Rehabilitation71(2), 5-13.

Rogers, C. R., & Farson, R. E. (1957). Active listening. Lexington, Massachusetts: D.C. Heath and Company.

Change and Control

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change for the better

I’m not a big fan of change. So when faced with a year that is sure to be chock-full of change, I can feel a little overwhelmed. Ok. That’s actually not true.

I can feel freaking terrified, sick to my stomach, near panic attack, bite my nails to the quick, SOMEONE LET ME OFF THIS MERRY-GO-ROUND called life screaming, “abandon ship! abandon ship!”

I’m not even a spontaneous person. My family knows not to ever throw me a “surprise” party. To me ordinary is extraordinary. I just hate change. For me, it’s all about control. That’s right. I’m a bit of a control freak. There is an upside to being a control freak. I am very organized. I’m punctual and responsible. There are, however, all kinds of negative things that come from being a control freak and refusing to accept change too.

I had fairly significant OCD tendencies throughout my childhood and into my early 20’s. As a teen, I developed bulimia nervosa after facing my first big change moving away from home to go to college. Emotionally, I drove some people bananas with my need to control and drove some people AWAY as a young adult.

If you believe everything happens for a REASON and that there is a life lesson to be learned in everything that occurs, one could hypothesize that my developing acquired disabilities was the best (worst) thing to ever happen to me! My hearing loss began at the age of 25 and was a progressive loss. I wasn’t completely deaf until the age of 32 so I had a long time to adjust and cope. Meniere’s disease was diagnosed at the age of 35, though I suspect I had it from my early 20’s. It, too, became progressively worse over time; in part, because of multiple mild concussions. My health issues forced me to change. To remain independent (something I discovered was extremely important to me), I found that I had to work hard at adapting. I had to embrace change instead of shy away from it or pretend it wasn’t happening.

Living with acquired disabilities means something CHANGED. You have to adjust. You have to make choices about how you will cope and how you will treat the diagnosis or disorder. You have to determine how you enlist others to assist – if at all. What adaptive equipment or technologies are available to mitigate the disability? How are you going to mentally and emotionally adjust? (For acquired disability or illness never occurs without having an impact in other areas of WHO you are…)

At the age of 48, I have lived more of my life adjusting to my new limitations than I did to living in a relatively “worry free” life. Here are some things about change that I have learned.

1. Take notice of changes.

This means you have to really get to know yourself. Habitually take your own “pulse” and see how you are doing. Make note of the readings on your “tension thermometer”. How are you sleeping? How are your relationships?

You don’t want change to take you by surprise. One must deliberately brace and expect changes. Be on the look out. Identify health (or mental health) changes.

2. Accept change with a positive attitude.

You cannot stop change, nor control it, but you can change how you react to change. We’ve all see the serenity prayer before. For those of us with acquired disability or illness, however, following these words of wisdom can be very freeing.

God … grant me the serenity
to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.

3. Learn to relax. 

Even up-tight control freaks can learn to relax. One of the most important things I learned in vestibular rehab was how to relax when falling. We naturally stiffen up and become tense when we are “on our way down”. I learned to relax my leg muscles so that I immediately dropped to my caboose instead of falling like a tree cut off at the base.

I have also learned to take “me time” every single day and refuse to feel guilty for taking the time to do so. It may be something as simple as looking through a friend’s collection of photographs. It may mean some personal journal time. I might choose to read a good book – that has nothing to do with psychology or my dissertation. I may burn my favorite candle while cuddling with my assistance dog on the floor in the dark.

4. Ask for help.

It took me so long to learn that it didn’t make me weak to ask for help. I chose to be partnered with an assistance dog so that I didn’t have to ask for as MUCH help from other people. In spite of this life-changing decision, I still occasionally have to ask for help. When I do, I don’t apologize first.

“I’m sorry to have to ask you this, but could you help me? I’m so sorry. I hate asking for help, but do need your assistance. I’m sorry I’m bothering you!”

Please don’t ask for help like this. It’s rather pathetic, isn’t it? Yet, we tend to react to even THINKING about help as if asking is something to apologize for when doing the asking. Honestly, most people are glad to help.

If you really have problems asking for assistance, at least learn to ask others “how can I do this task independently?” Brain storm with OTHERS what you can do to remain independent. I have run completely out of ideas about how to do something safely, only to discover through someone ELSE a “brilliant” work-around.

5. You are changing, but you are still You.

Frankly, all of us change as we grow older. The changes may occur physically, emotionally, or mentally. Yes, change may seem more difficult when it occurs as the result of acquired disability or chronic illness, but ya know something? You are actually stronger for it. You had to adjust and perhaps been forced to make changes. The core of who you are does not change. We tend to fear that being “disabled” becomes our new identity. No one signs up for that, and it is never chosen. So when it happens… know that who you are hasn’t changed. If anything you become a better version of you.

One of my favorite quotes about change was written by John Eliot. “As soon as anyone starts telling you to be “realistic,” cross that person off your invitation list.” We can’t avoid negative people. They will cross our path. They will see our being differently-abled as license to give-up and quit. They’ll tell us to be realistic and stop aspiring for “more”. You may not be able to avoid these morons people, but you don’t have to hang out with them on purpose.

So I gear up for a big year of changes for me. I’ll be finishing up my coursework in school, retiring my assistance dog, and face some possible surgery. Those all seem so darn negative, but there’s always two sides to every “coin”. My dissertation awaits – and geesh, but do I love to write or don’t I? I’m retiring Chloe, but I have my close-knit Fidos For Freedom family and friends supporting me with a successor dog eventually entering my life. I hate surgery, but really look forward to getting to the bottom of some of the neurological issues I’ve been having. I can identify and sense these impending changes with a weird sort of relief. I have discovered that change can be good. Relinquishing control can be freeing.

Denise Portis

© 2015 Personal Hearing Loss Journal

Cats Get a Bad Rap

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CatAndMirror

I love dogs. However, I do love cats, too! I don’t currently own a cat which is just weird for me. Cats have a bad reputation though, don’t they? Think of the phrases we use about cats:

1. Tom-cattin’ around.

Males (or even females) slinking around at night looking to get some-some. (Jus’ tellin’ it like it is, folks). Apparently the name of said feline is also Tom.

2. Caterwauling

This is usually a female cat screeching and yowling around while in heat. It is used to describe humans at great risk to the idiot males who determine it would be funny to do so.

3. Like herding cats

This is impossible. They don’t run in herds so aren’t we the stupid ones?

4. Let the Cat out of the Bag

This means to tell a secret. Frankly if my cat was ever in a bag it would not be a secret. The whole house would know. If you don’t understand, you’ve never owned a cat. They are either playing in it by choice, or stuck in it due to HUMAN error.

5. Cattin’ around

Similar to “tom-cattin’ around”. To wander aimlessly looking for entertainment – usually resulting in feline delinquent behavior.

6. Fat cat

Evidently this means loaded, or very rich. I do NOT use this phrase this way.  At the time I was talking to an overweight cat.

7. Curiosity killed the cat

Cuz evidently even though it 1) looked dangerous, 2) smelled dangerous, 3) sounded dangerous, they couldn’t help but investigate anyway. Which leads to #8

8. Cats have nine lives

They get killed a lot. Or, at least do really stupid things that almost result in their demise.

9. Cat got your tongue

Ewww. Just ewww. Yet, it means speechless. This happens to me a lot. *rolls eyes*

10. Cat walk

To walk with splendid balance and grace with a sexy little swing of the hips. Evidently models walk on this. Perhaps cat calls came from this practice.

Cats can be pretty special critters though, and even better fur-babies. They sure get a bad rap, however. People seem to either love ’em or hate ’em. I find few who are indifferent. I’ve met some pretty special cats that behaved very un-cat like at times. And frankly? I’ve had some cats climb up in my lap and allow me to pet them while they purred my cares away more than once. They can be extremely intuitive.

People with Disabilities Get a Bad Rap

I don’t like identifying as a person with a disability. It is the language used by the laws that protect my rights as a person with unique challenges, however, so I accept the “label”. Folks with disabilities get a bad rap though.

Here are just a few of the things I have heard:

1. We complain. A lot.

Evidently about anything and everything; but mostly about our disability. I mean… it’s as if we live with it 24/7 or something. Pretty lame, aren’t we?

2. We are lazy.

In the decades I have mentored and worked as an advocate for persons with disabilities, I believe one of the toughest diagnosis is that of CFS (Chronic Fatigue Syndrome). There are some other diagnoses that are closely related in which the primary symptom is extreme and debilitating fatigue and/or pain. It hurts to do anything. So sometimes, complaints just slip out of the mouths of these brave people. Maybe curse words too, but STUFF SLIPS OUT. It is very, very difficult to live with one of these diagnoses and I admire these folks. I do.

3. We are extremely dependent.

Most of the people I know who are differently abled – work very hard at learning to do things DIFFERENTLY so that they can remain as independent as possible. If you knew how hard it is to ask for help you’d never roll your eyes at a request from someone living with chronic illness or disability.

4. We will never contribute to society.

Geesh. This is so, SO wrong. Most of those I know living with a chronic illness or disability are super busy working in their community. They “give back” at times to the point of going to far and doing to much. Everyone has a desire to be needed – to matter. This includes people with disabilities.

5. We are drama queens/kings.

I’m a bit of a drama llama. I prefer this term because I am crown-less yet recognize I, at times, spit for attention. But seriously… most of us HATE attention. We are trying to just “be normal”. We haven’t created our own song and dance in expectation of applause.

6. We are hypochondriacs.

The thing about long-term disability or chronic conditions, is that you become an expert on your diagnosis. As a matter of fact, at times, you know more than your doctor does. You have researched and investigated everything about your diagnosis and in so doing have learned about similar diagnosis or co-morbid diagnosis. We seek to understand it because we are trying to survive.

7. It’s all about us.

There are selfish people with disabilities and selfish people without disability. Many of us (just like you) work hard at making a difference for others. We actually hate the attention and don’t want it to be about us. We love being able to do even small things to help someone else.

8. We will die young.

Many people with disabilities live an average life span. But folks? They do so never ditching the diagnosis. This makes them WARRIORS. This makes them courageous. This means we could take some lessons from these people.

There are also those whose diagnosis mean their life span will be cut short. These people are still warriors. They simply have less time to prove it to you. So make it a little easier for them and stop judging and embrace their uniqueness. None of us are promised tomorrow. Even those without serious and permanent diagnosis could be gone tomorrow. Shouldn’t we all work to make a difference TODAY instead of write people off as if they have no future?

9. We don’t care about our health.

Yes. Some diagnosis make it really difficult to move, to exercise, and to live a healthy lifestyle. Sometimes people who are differently abled gain weight. But added pounds does not mean they don’t care about their health. As a matter of fact, most of us have learned that dietary changes, moderate (doable) exercise, and holistic approaches can improve the quality of our life. Don’t preach at us to become “juicers” or vegan, or organic shoppers. Don’t tell us to just get out and MOVE. Folks who live with a long-term illness or disability are often avid health nuts. They may not look it, but they work to keep things such as blood sugar, cholesterol, and blood pressure in control. Please don’t judge.

10. We are disabled.

Being disabled does not mean not being able. We are very able. We likely just do things differently. We are still more LIKE you, than not like you. We feel. We love. We get pissed. We yearn to connect. We throw our dog’s ball and scratch our purring fur-balls. We are very able. If in doubt, get to know us and discover it for yourself.

Denise Portis

© 2015 Personal Hearing Loss Journal

Cognoscente, Aficionado, and Cutting the Crap

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The bunny is currently resting...

The bunny is currently resting…

It may or may not be news to you that I am in grad school. Part of the program I am in requires academic residencies. I just completed another one on Dec. 27-30th and there are few things I despise more.

It isn’t because I don’t enjoy the workshops and expert speakers. I do.

It isn’t because I hate the schedule. It’s hard, but I can do it.

It isn’t because I am not learning anything. I am.

Academic residencies are very tough for me because a lot of blow-hards attend and I consider myself lucky to exit the residencies having met one or two people who ARE NOT.

I’ll admit it. I am a bit of a loner. It isn’t that I don’t LIKE people. I do. As a matter of fact, I love people. However, if I have 30 minutes to eat lunch, I’m not going to go to a crowded restaurant, nor stand in line for a turkey sandwich that costs $11.00 plus tax. I’m going to pack my own lunch, sit in a nearly deserted room at the next location of a required workshop, and work on my homework while I regenerate. (Did I explain I was part Borg?)

On Sunday, a longer residency day for me, I was holed up in a large room eating my lunch and tossing Chloe’s pink bunny while completing an essay on boolean phrases (aren’t I talented?) Unfortunately, by day two, other people are also figuring out these empty workshop rooms are great places to eat lunch. Some of these people are talkers. *grimace*

I suppose an “off vest” service dog playing with her toy, wagging her tail like crazy,  and huffing quietly to me so I’ll throw it again, invites spectators and conversationalists. Sometimes I really want to PLAY DEAF. I cannot, however, for I feel a certain responsibility to be a good testimony and example of a “hearing again” person. So darn it. I am pulled into conversations.

“Oh this is great that you allow your service dog an opportunity to unwind. That is a great stress diversion instrument!” said a very well-meaning (I’m sure) observer.

I know I looked at her funny. I’m pretty sure an eyebrow went up. Unfortunately, funny looks and raised eyebrows invite further conversation.

“Will your dissertation be about the place of service animals in the lives of persons with disabilities since you are a cognoscente in this area? I know many of us who are scholar-practitioners are aficionados in our area of interest”, said the now expectant observer.

I may love people, but sometimes? Sometimes I’m not very good with people.

I snorted.

That’s right. It’s a good thing my sinus were clear because lord knows what would have flown out.

I pointed to Chloe who was currently rolling around “scenting” her pink bunny and said, “You know that is a slobbery toy? It’s not an INSTRUMENT. I am doing my dissertation on something I believe in and yes, know well because I live it. But let’s cut the crap on the big talk. It’s lunchtime and I’m relaxing so you don’t have to impress me. Heck. I hardly even know what you are saying!”

Are you as horrified as I was? I wanted to slap my hand over my mouth and then immediately apologize. What happened next had me exchanging emails and finding a new friend.

“Oh thank God. My partner tells me to cut the crap all the time. Don’t you hate feeling like you have to ‘play doctoral program’ when you are here? I mean we are all just trying to get done, doing our best to reach goals. Holy realist, Batman. Can I eat lunch with you tomorrow?”

(In case you are wondering if that is her quote, I can’t make this stuff up. I even emailed her later and asked to “quote her” in an upcoming post).

I howled with laughter. I mean, I had tears rolling out of the corners of my eyes. Chloe was a bit concerned but continued to take advantage of her off-vest playtime.

Stop Trying So Hard

In the years I have chosen to identify as a person who is “differently abled”, I have met two kinds of kin.

One group of folks I feel a certain amount of kinship with since they, too, live with a chronic condition, disability, or invisible illness, are commitment-aholics. They choose to be involved in everything – just to prove they can. (A friend wrote an excellent post about this – click here to read it). They work so hard at making sure they are independent, they smack the back of the helping hand reaching towards them.

They work so hard at proving themselves at work, they are over-committed to volunteer committees and focus groups. They strive so hard to show the world (and themselves) that they CAN, they do very little well. They bust their butts to impress us. The reality is they walk around with – erm… – busted butts.

My other “cousins” are people who refuse to participate in much of anything for fear of letting others down. Instead of learning what their own physical, emotional, and mental limitations are and living an abundant life within those boundaries, they isolate themselves and refuse to put themselves in a position that they may blow it. They get around making poor choices by choosing not to make any choices at all. Their souls are withering and they don’t even know it.

Use Your Talents and Skills. Just STAY REAL

We all have talents. These are gifts we are born with while a skill, on the other hand, is something we are good at because we’ve worked hard at being good at it. We can even take natural born talents, work hard, become skilled, and use these abilities in our personal and professional lives.

It is very important to use what is available (talents) and work hard (become skilled) so that each of us can make a difference (with our abilities). Yet, too many times we get side-tracked by making sure folks recognize what we are good at doing. Cut the crap. Be real, but be nice. Be who you are – which means at times you are wearing a cape, and other times you are asking for assistance. Share who you are (why keep abilities to yourself?) but be a humble expert in who you are. Don’t be an over-achiever. Don’t be an under-achiever. Just be real!

Denise Portis

© 2015 Personal Hearing Loss Journal

 

Accepting Help ≠ Dependence

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This service dog took full advantage of a holiday vacation in Florida.

This service dog took full advantage of a holiday vacation in Florida.

My Christmas holiday was a blur. They can be that way sometimes. I flew to Florida with my husband to be with my parents for Christmas, but I had a TON of homework. Chloe, faithful service dog, at least got the opportunity to really chill out. When I got home, I headed to an academic residency for 4 days.

Even being super busy, I still learned a few things. I learned some things about myself, about other people, and about acceptance. I began to lose my hearing and balance at the age of 25. Now that I am 48-years-old, you would think I have learned all that one can learn after living with hearing loss and a vestibular disorder for 2+ decades!

Ungracious Acceptance

Acceptance of my life as it is, seems to be an ever-evolving concept. Sometimes I take things in stride. Progression of the toll my diagnoses have, a new “timber – down goes Denise – fall”, having to switch out cochlear implant batteries mid-conversation, taking the elevator instead of escalator or stairs, and having to wait for an empty handicap stall in public bathrooms so that my dog and I BOTH fit, is really second nature for me now.

But sometimes? Sometimes I am WITCHY about it. (Feel free to put another first letter there as it probably fits from time to time). Maybe it’s hormones? Perhaps it is a lack of sleep? It may be I just had an unpleasant encounter with someone who was condescending towards me when my being differently-abled became apparent. For whatever reason, at times when someone asks if they can assist I must look…

S c A r Y

I assume this because their eyes get big, they throw up their hands in an “I surrender!” pose, and they take two full steps back. I don’t MEAN to put off that vibe, but I know there are times I must do so. I work SO hard at being independent. I love the color purple, but that isn’t why I carry a bright purple cane. I love dogs, but that isn’t why my 24/7 partner is a service dog from Fidos For Freedom, Inc. I love dangly earrings, but I don’t wear “bling-bling” on my cochlear implant because I’m a drama queen.

(OK, OKAY! I’m a drama queen, but in THIS instance it is not why I have bling-bling on my cochlear implant! Yeesh!)

I do all of these things to be independent. I yearn for independence and inner strength. I forget sometimes that the latter is the result of a “thinker” and “feeler” in sync in the body of a person who is differently-abled. Part of it, I actually HAVE caught the exasperated looks on faces when I do ask for help with something. It can be fleeting, but it’s there. I’m deaf, not blind. (We can debate if differently-abled people are far too sensitive about this and see things that are not there later).

Yeah, so? Let’s Go!

While in Florida, amidst homework and research, I did insist on going out to eat every day. I did a little bit of shopping at a place we don’t have in Maryland. Bealls was a very cool place! We also do not have a Belk. So yup. I did a little shopping.

When we went out on the town to do these things, we had to borrow my parent’s car. It is a big ol’ SUV and Chloe had to sit in the back compartment. It gave her plenty of room to stretch out and seemed like a great option for four people plus one service dog. The problem was that my parent’s SUV sits very high. Chloe is 10+ years old. She is retiring in May of 2015 (unless she lets me know it needs to be before then). The first couple of times I gave the “Chloe… OUT” command, she jumped from the back, only to have her front legs collapse and do a hound face plant in the parking lot. The first time it happened, I gasped. The second time it happened, I’m pretty sure I yelled. OK, yeah. I don’t yell. I have a hearing loss. I SCREECH. Ask me to demonstrate sometime, but bring the ear plugs.

Because my husband, Terry, didn’t want to see what a third time would trigger, he suggested, “Let me lift her out of the back and set her on the ground!

I said, “Ok, but do it in a way you don’t embarrass her. Make it quick and don’t make a big deal about it.

Perhaps I should explain that I disagree with those who say that dogs don’t exhibit or feel some of the same things humans do. I have seen dogs excited. I have seen them pissed. I have seen dogs pouting (do I have some stories about my grand-dog, Pegasus, or what?). I have seen dogs embarrassed. Point & laugh and dogs will duck their heads in shame/embarrassment.

Chloe’s weight ranges from 59-62 pounds. Needless to say, we don’t carry her around. I wasn’t sure how she would respond to being lifted from the back and set on all fours on the pavement; nor, did I know how she would respond to being lifted up into the back of the SUV.

The first time we opted to lift the service hound out, I held my breath. Terry reached into the back, hooked his arms under her and locked his hands over her spine, and carefully picked her up and set her on all fours.

PUH.

I exhaled rather noisily, and watched as she wagged her tail and moved to heel position, looking up at me as if, “Yeah, so? Let’s go!

I was stunned. I had a treat in my hand to cajole her back into a good mood. Instead I went into the store as if nothing out of the ordinary had happened. I watched Chloe from the corner of my eye. (Ummm… explain to me how oval shaped things like eyeballs have corners?) I digress…

I fully expected Chloe to act, I don’t know… WEIRD for awhile. However, she took it all in stride. She needed the help, being rather fond of her own face, and didn’t even miss a step in going on about her job after accepting assistance.

Do you know where I’m going with this?

WHY???????

Why do we act so weird when we need help? Maybe it is just a little help.

… like picking up the dropped blue tooth device I spotted in a hallway that I could not bend to get, and didn’t want Chloe to destroy by enthusiastic fetching.

Maybe it was a lot of help.

… like helping me dislodge my wedged rolling briefcase from the elevator door as it was stuck solid. I struggled with my butt holding the door, cane braced, and dog freaking out as I tugged on a very STUCK wheel.

Sometimes? Sometimes, we just need a little help to continue doing our thing. We need a helping hand. We aren’t signing an I.O.U. If we truly want the world to be a kinder place, then why are we prickly when someone asks if they can help? By accepting help we are not sticking a “I’m WEAK” note on our forehead. We can accept help and still be independent. We aren’t waving all rights to an independent life should we accept help once in awhile. For most people, helping another is done so with no strings attached. They don’t even think twice about it. They may never think about it again, while WE sit there perseverating on it and making a huge deal about it. Why can’t we just say, “thank you!” and our attitude be, “Yeah, so? Let’s go!

PRIDE.

Pride can be a good thing. There are good types of pride, and crippling types of pride. Learn the difference. Learn to accept help. It doesn’t mean you are signing on to a life of dependence. It means that you are SMART. You know your limitations and are making wise choices to do what is best for YOU. Face plants on the pavement aren’t fun. All you will have for that type of stubbornness is a skinned chin. (Ask Chloe…)

Denise Portis

© 2015 Personal Hearing Loss Journal

 

 

 

As You Wish…

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blog as you wish

I’m a HUGE “Princess Bride” fan. Perhaps I’m even classified as being an “annoying Princess Bride fan“. I know so many of the lines by heart and they tend to slip out in both opportune and inopportune moments. If you’ve never seen the movie – for shame. Seriously, it is one of those ridiculous movies that everyone needs to see at least once. You will be talking about it for the rest of your life. I promise.

One of the best known (and faithfully repeated) lines of the movie is that of our hero, Westley. He says, “As you wish…” to his beloved, Buttercup, (hey… I can’t make this up) to genteelly and sweetly acquiescence to her every request. Yup. This makes him a bit of a sap. But he does become the “Dread Pirate Roberts” later and reveals to Buttercup, that he is still her “Westley” in this dramatic (and hysterical scene):

In the end, we learn that “trewww lub” (true love) is worth fighting for and that we should be careful about agreeing for the sake of keeping the peace. Well… at least that is ONE “moral of the story” I got out of this favorite! :-)

When People with Disabilities Keep the Peace

We’ve all heard how important it is to have the right attitude when you are advocating for your own rights or needs, or on behalf of another. “You can catch more flies with honey than vinegar“.

Trust me.

I know how hard this can be at times. Having had it drilled into my head, I am fully aware that how the public interacts with ME, may influence how they interact with another who has hearing loss, balance disorders, or a service dog in the future. That “burden” keeps my mouth shut when I strive to bite my tongue. But ya know something?

Sometimes when my attitude says, “As you wish…“, I’m really only hurting myself AND others.

About a month ago, I was walking with a colleague to a meeting in another building. We had to walk through the Student Union bldg., and then go to the second floor. We were talking as we walked. My colleague turned to go up a 20-step flight of stairs… still talking.

I hesitated and said, “the elevator is up the hallway…” and my friend interrupted and said, “Come on! We need the exercise!” She continued up the stairs and was still talking.

I put Chloe is a close heel, looped my cane over my wrist, grabbed the handrail and took one careful step at a time, all the while with a death grip on Chloe’s handle attached to her vest. By silently agreeing, I practically shouted, “As you wish…

I can’t talk and climb stairs, so I quietly made my way up the stairs one careful step at a time. When I got to the top of the stairs, I exhaled heavily (for it seems I was holding my breath), and looked up with a triumphant grin. My smile immediately faded because my friend stood there with big tears in her eyes. My brain started processing sound again (for it had been wholly fixed on arriving ALIVE at the top of the stairs), and I belatedly picked up some of her words…

For heaven’s sake, why didn’t you remind me you can’t do stairs? All you had to do was remind me!

I was struck dumb (silent – not mentally – grin) for a second and said, “Well I was just keeping the peace!

She said, “You keep the peace by reminding me what your needs are. That’s not keeping the peace, that’s being a martyr. Just tell me!

I apologized (profusely).

We can remind people what we can, and cannot do safely without sounding as if we are complaining. We need to learn to be pro-active in a positive, upbeat way. Don’t apologize for who you are or for what your needs are. However, be careful not to agree to something foolhardy like climbing a set of stairs when there is an elevator right up the hallway. My attitude of “As you wish…” could have set the scene for a disaster that day. Thankfully, it did not.

“Shove it up your… “

There are times when people with disabilities need to actually be a little more firm when they are educating or advocating. I don’t always do this well. I try to even interrupt my rising temper by reminding myself that I represent “Fidos For Freedom, Inc.“, and “Anne Arundel County’s Commission on Disabilities“. I chant in my head, “Bite your tongue, bite your tongue”. It doesn’t always work. The phrase, “shove it up your… NOSE” (scared ya a minute, didn’t I – wink), reverberates in my head.

Monday, I stopped at the U.S. Post Office to purchase some stamps for Christmas cards. (Yes, I’m aware I’m late to this “party”). I saw a man leaning against the building, smoking. I sort of register this in order to use the door farthest from him because I cannot stand the smell of cigarette smoke. As I exited my car, I reached in and got my cane, closed the door… opened the back door to unload Chloe, adjusted her vest and leash, closed HER door and then turned to walk into the building.

It seems we had an audience.

The man leaning against the building said, “What a beautiful guide dog! My mother is almost blind now. Where did you get your dog?

I was so startled I stutter-stepped and screeched to a stop. I know my mouth was hanging open. I looked over my shoulder at my car. I pointedly looked at the car keys in my hands. I looked at Chloe and her visible vest that said “Service Dog” with tags that said, “Hearing Dog. Do not Distract”.

Then I made a mistake. I blurted. Nothing ever goes well when I blurt.

Is that nicotine or weed you are smoking?

His eyes got big. He stomped out his cigarette and stomped into the building. Then this little convo/prayer went through my head:

Ok God. I blew that. If I find that man in the building please give me the opportunity to apologize and make that right. But… please don’t let me find him because I swear he’s stupid and higher than a kite!

Yeah. It seems I can’t pray with the right attitude right after a ridiculous encounter either.

But ya know something? There ARE times when it is ok to put someone in their place. Especially if someone repeatedly makes the same comment or observation about you or people with disabilities. You can be firm and be kind.

I didn’t tell the “smoker”, “As you wish…” with an attitude that what he said made perfect sense. However, I could have reminded him that a person with vision loss would not have just pulled into the parking lot and got out of the vehicle. I could have educated him quickly and politely that there are numerous types of service dogs and canes. Instead, I was a smart aleck. Justified? Perhaps. However, in the end, I didn’t promote any “cause” or advocate in a positive way.

So Where is the HAPPY MEDIUM?

If you have lived with invisible illness or disability long enough, you DO eventually learn how to balance all of this. You learn how to remind those who have known you long enough that they may have forgotten some of your limitations. You speak up for yourself. You also learn when to firmly, but kindly, put someone in their place. There is a time for that as well.

You are going to make mistakes. Your attitude will scream, “As you wish…” at times when you simply need to say, “I can’t and won’t attempt that“. You are also going to learn to not label someone a pothead, and instead take 60 seconds to educated them in a positive way. It’s a balance we all eventually learn.

If you haven’t seen, “Princess Bride” – you are missing a treat. :-) I hope all of us who are differently-abled, learn to balance how to advocate and educate others.

Denise Portis

© 2014 Personal Hearing Loss Journal

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