I Would Rather Walk with a Friend in the Dark, than Alone in the Light

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I would rather walk with a friend in the dark, than alone in the light — Helen Keller

I graduated from Walsh High School in a rural area of Colorado in 1984. Fast forward 34 years <wince> and I am graduating again with now my final degree. In 1984 I was a healthy young woman with a moderate hearing loss in one ear. In 2018 I am a middle-aged woman in a perpetual state of getting healthy <wince>, profoundly deaf (and “hearing again” as long as I am wearing my bionics) and an adult with disability from Meniere’s disease and Post Concussive Syndrome.

It may surprise you to learn that I am happier and healthier (emotionally and psychologically) than I was at the age of 18. Life has been hard – and continues to be, but doesn’t everyone experience that in some form or fashion? My challenges have made me who I am today.

The 2018 Denise, has found a life worth living by embracing my unique challenges and focusing my life and energy in the disability community. Oh yes! It’s hard sometimes… dark even; however, I am amongst friends, fellow warriors, super heroes, and advocates.

May I just say, “THANK GOD FOR THE INTERNET”? There are numerous research studies that support that the Internet has connected, educated, and created a platform for advocacy for those with disability. The community, the friends I have found over the last 34 years has made every challenge I’ve shouldered worth it. Most of the people with disabilities I have come to know have different challenges and diagnoses. Yet all work hard to experience the best quality of life they can. We use a variety of accessibility tools, medications, assistive devices, and medical procedures to maximize every opportunity while insisting on a productive and meaningful life. We are stubborn. We believe in self-care. Our priorities tend to be the things that really matter. Some of us are Spoonies.

My dissertation, something I have become quite passionate about, revolves around the theory that traumatic events and diagnoses do not have to destroy a person. As a matter of fact, a wealth of research (my own included) supports that these events can stimulate growth – the foundation of Posttraumatic Growth studies.

This doesn’t mean that I do not have bad days. They happen. Those bad days are something you recognize and experience as well. Yet I have learned that walking in the dark and challenging path of life with disability with all OF YOU, is far better than any walk I took on the lighted, well-tended path alone.

My challenges are progressive. Do you know that doesn’t even bother me? I’ve learned how resilient I am and I have learned to:

  1. Reach out to my community when needed for support
  2. Ask for advice and work-arounds
  3. Find new ways of doing things
  4. Rely on a loyal service dog for minuscule but necessary tasks I was too afraid to bother others with
  5. Believe in myself
  6. Pray hard – but work harder
  7.  Never stop learning
  8. Believe the future is accessible
  9. Stand with others
  10. Be vulnerable and open about the good and the bad

uphill-battle

I’ve also learned to CHOOSE HAPPINESS and to do my best to spread that message. It may seem like a difficult choice some days, but cognitive psychologists agree that if you deliberately change your thinker (your chooser), it will change your feeler, and show in a change in your behavior. It is amazing what “choosing happiness” can do to your personal outlook. Don’t be afraid to embrace the days you scream and cry and cuss up a storm (sorry mom). Those days will happen as well. I have learned though that if my focus is positive advocacy and choosing happiness, those screaming days are few and far between.

I’ve always admired Helen Keller. This intelligent and gifted woman had neither sight nor hearing. Yet Helen learned that her life “in the dark” was pleasantly full of like-minded friends and associates. She knew the value of walking in the dark with a friend. I hope you can learn to embrace that mindset as well.

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal

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Chronic Pain – Part ONE

Welcome to guest blogger, Deborah Marcus, long-time friend (sister), fellow advocate and writer, and professional photographer. It is always great to have guest bloggers on Hearing Elmo because although I have lived with disability for 27+ years, I do not and cannot understand chronic pain conditions as it is not something symptomatic of my own challenges. I have always been thankful for that — for one thing I am a wuss. I have loved and admired Deb for a long time, in part because I consider her a warrior woman who DOES live with chronic pain. This is part ONE of a multi-part posting. Follow up posts in the future will link to this one so that her story chapters will remain connected.

What persuades me to step back from the ledge? What worked yesterday, today, what will work tomorrow? Those who live with chronic, severe pain or illness are familiar with these questions.

I have lived with disability for much of my life. Hard of hearing from a relatively young age, severely so through my 20s and 30s until I began to hear again at age 42 with cochlear implants, I am no stranger to the need to make adjustments. I have lived with other disabling conditions, too, which unlike hearing loss and deafness are largely a product of the external forces of trauma and abuse. At 54, I have lost count of the moments when I’ve told myself “keep on, keep on”. As a result of physical abuse which once took the form of being sent down a long flight of stairs, backwards and head first, I have experienced increasing challenges with my vestibular (balance) system. Once a series of intermittent episodes of vertigo, my imbalance is now chronic. For over two years now, I have not had a minute where my equilibrium is not in a struggle with the space around me. Along with this is a condition that I have managed to cope with for 38 years, for which I had no name until recently. Three years ago I wrote a short piece describing life with trigeminal neuralgia. Things have changed regarding my TN status since then, but it’s instructive to see where I was at that time: https://visionsofsong.com/2015/07/10/into-the-sunshine-living-with-trigeminal-neuralgia/

It is not the only pain condition I live with, but it is the most distinctly life-altering. About six months ago, I realized that the medication treatment that was giving some relief wasn’t doing much anymore. Trying different medications and doses brought no help. I spoke with my doctor, who referred me to a hospital that does high volume work in the areas of gamma knife radiosurgery and microvascular decompression, the only two procedures currently advised for my condition.Both procedures have a relatively high success rate for trigeminal neuralgia, 70 to 80 percent depending on various factors. After consultation, in early March of this year I underwent the gamma knife procedure. After a week’s time, I felt some improvement, which was incredibly uplifting for my mood, which had reached new lows. Knowing that it can take a couple of months to see the full effect, I hung in on the bad days, rejoicing in the better days in between, and anticipating further improvements. In the past couple of weeks, I have not been doing well. This past week has been terrible, and I have found myself bursting into tears as much due to despair as to the pain levels. My world, which was shrinking due to severe, chronic facial pain, was beginning to open up a bit, only to feel shrunken once again. I can’t decide which is worse, not thinking there would be anything that could really help bring my pain levels to manageable levels, or trying something that may in the end prove to be a failure for me.

The depression I have been managing somewhat successfully stepped to the front of the line. I became obsessed with the idea of planning my death. Not yet planning my death, but finding the idea of planning it out, by suicide, an intriguing possibility. Why? Why now, when I’ve lived with physical and psychic pain for so long, does it seem like now might be a good time to end my life? What makes one moment better than another, or none of them the right time? As much as I have dealt with depression to varying degrees throughout the years, I don’t recall a moment exactly like the one I had this week, thinking that maybe I’m done, really and truly. I felt that if I expressly stated that to anyone close to me, they would call in the big guys on me, which I do not want. Besides, I’ve been feeling like I’m wearing out the handful of good, caring people in my life with my challenges. I did not want to burden them with such thoughts. I knew that I could call the National Suicide Prevention Hotline (found here https://suicidepreventionlifeline.org/) and opted to use the chat box to communicate rather than the phone. It took a little while to get to the front of the line, but I wanted to see what would happen. As a Mental Health First Aid instructor, I know what it’s for and recommend it often. I wasn’t sure if it made sense to call since I wasn’t sitting by the computer with a gun or a bottle of pills in my hand. I recognized my need to reach out, and am glad that I called. The person on the line didn’t tell me much I didn’t know, but I could tell they cared that I was struggling, and that meant a lot. At the end of the call, they ask for some feedback. One of the questions has to do with feeling hopeful/hopeless. I was able to say that I felt a little less alone after this brief conversation. It got me thinking about how much, and yet how little I need. I suspect this dichotomy is true for many of us. I can only share from my perspective, and from what I’ve teased from things shared by others over the years.

There has been a fair amount of discussion lately regarding the intersection of childhood trauma and health outcomes. If you would like to look at this in some depth, you may consider starting here, though there are many other resources: https://www.ucsf.edu/news/2016/10/404446/undoing-harm-childhood-trauma-and-adversity

As a survivor of (and sometimes thrive-r in spite of) sexual and physical abuse, having undergone several rounds of therapy to figure out how to cope, I did not immediately make the connection between my physical challenges and what I had experienced while growing up. The mind-body connection was happening in spite of my limited insight. Oh, I understood that my mood could be connected to my experiences, but pain? Not only acute pain, or pain that is persistent due to an event, but pain in parts of the body that were not injured, or if they had been, were still in pain long past when the bodily injury had healed. I have been handed and thrown off a diagnosis of fibromyalgia twice in 12 years. No fibro for me, thank you! It’s that diagnosis they give you when they don’t know what’s wrong, is what I would tell folks. If sounds so…hopeless. I know some who live with this diagnosis, and they find ways to make a good life for themselves. It felt like being saddled with one more thing that I didn’t want to carry.

But trigeminal neuralgia, that’s something they can tie to an event. In some cases it develops post-shingles. In others, trauma can be the culprit, and again, we suspect that is the case for me. I have been more comfortable talking about this severe and persistent pain condition than any of the others, yet there is no denying that all of what I experience is intertwined within me, and so perhaps the only way through all of this is through all of it. Still, I haven’t figured out what to say to myself to want to keep on during the worst moments. I think I put every penny I had on this horse winning the race, with the radiosurgery giving me significant relief for a while. If it doesn’t, I’ll need to see if I can find another message that is meaningful, to keep on, keep on.

I welcome feedback, and aim to follow up with another piece on the topic of chronic pain, disability, and the reconstructing of a meaningful life.

Deborah Marcus

https://visionsofsong.com

 

When I’d Rather Beat Them With My Cane…

My kids L to R
Kid-in-law Khris
Kyersten
Chris

The people closest to me, like the 3 munchkins above “get” me. They accept me for who I am, disabilities and all, and take my limitations in stride – really as if there are no limitations at all! I love them! These three young adults are great human beings. They treat others with respect, and I rarely, if ever, want to beat them with my cane.

I don’t know about the rest of y’all out there living with disability and/or chronic illness, but the hardest thing for me to do is to forgive someone who says or does something to ‘dis me as a person with disability. Did you know that there are apology languages? Drs. Jennifer Thomas and Gary Chapman wrote a book called, “The 5 Languages of Apology” (Expressing regret, Accepting responsibility, Making restitution, Genuine repentance [change], and Requesting forgiveness) and it is being used more and more in relationship psychology. I encourage you to check it out.

However, my point today is forgiving someone for being a butthead, and no apology is forthcoming, nor will it likely ever be spoken. Forgiving someone who doesn’t say “I’m sorry“. Ugh! That is incredibly hard for me to do.

Monday I was in my favorite grocery store, Giant. I love this particular store because the aisles are super wide and I can navigate safely in there most of the time. My husband has been sick with a cough/cold. He even missed some work so I knew the man was REALLY sick. (Especially after he even went to the doctor!) Before walking into the store, I texted him and asked him if I could get him anything since he was starting to feel like eating again.

Spaghetti-o’s with franks, please“. (Gross… am I right?)

So I found the aisle with all the canned and boxed goods for children (ahem), found the spaghetti-o’s on a shelf about ankle-high, picked up a couple of cans and promptly dropped them on the floor as I stood.

That by itself is not unusual. I have suck-poor grasping abilities. I was just getting ready to ask Milo (my service dog) to “fetch cans”, when a hand reached out and plucked them from the floor.

It startled me but I had the good sense to say, “Oh. Um. Thanks!” In my normal day, I get that people just want to help.

“You’re welcome. I could tell you would never get those“, she replied.

I paused. Actually, I COULD get those. It would take me a second or two longer while I used cane, and deep breathes while bending to get them, but I could have done it. Milo, also, loves getting cans. So I had this covered. That wasn’t what bothered me either. I always assume people mean well.

What bothered me was what she said next.

You know they have a service here for people to shop for you and just deliver the food for people like you?” she gritted out with a fake smile. Even hearing bionically, with all the nonverbal cues going on, I could tell she said it with some SNARK.

I paused again and made sure my attitude had it’s hat on straight before saying, “Yes, I have some friends who use that and really love it!” So I’m still not thinking at this point that I deserve an apology – yet. I’m cool. As a cucumber.

But then she said, “You should use it too. That way you aren’t taking up so much space in the aisles and making the rest of us wait.

I paused again. I wanted to make sure my cochlear implant really heard what I thought I heard. So I asked, “Did you say I should use the service because my being here makes shopping difficult for YOU? I think I’m offended” (said with a cheeky smile to let her know I was giving her the benefit of the doubt).

Yes,” she said as she turned with a flip to her hair and walking off with her cart. I felt like “flipping” her. I’ve always enjoyed using some universal sign…

The rest of my grocery store shopping experience was spent grumbling and mumbling under my breath. I mean, I deserved an apology! Right? I wanted to go hunt her down and beat her with my cane.

Yet, I knew I wasn’t going to get one. Not from this butthead stranger. I was mad at her for the rest of the day. By the end of the day I realized I had let this ruin my entire day. I needed to forgive her and go on, even if she didn’t deserve my forgiveness especially since there was not an apology.

I think it is really easy to get bent out of shape when someone hurts your feelings or acts offensive and it has something to do with your disability or illness. I mean, at the time… I felt my heart swell with righteous indignation. It changed to heartburn and indigestion fairly quickly, but still! If ever someone deserved a good ol’ cane beating, it was her!

One of the classes I teach at the community college is “Psychology of Relationships”. We have a whole chapter on forgiveness. A whole chapter! Here are some of the benefits of forgiving… even when an apology isn’t issued:

  1. Healthier relationships (even w/ others – those who did not betray you)  

    2. Greater spiritual and psychological well-being

    3. Less anxiety, stress and hostility

    4. Lower blood pressure

    5. Fewer symptoms of depression

    6. Lower risk of alcohol and substance abuse (Miller, 2014).

These are great benefits to YOU… the person who is doing the forgiving. And yes, even when there is no apology prefacing the forgiveness you extend.

Another personal example, about 13 years ago I lived in a different city in the mountain areas of Maryland. I was new to my cochlear implant and not yet partnered with a service dog. I was shopping in the SAM’S warehouse looking at some items in one of the aisles. Next thing I knew I was shoved and ended up on my back in the aisle, blinking up at a very surprised “shover”.

They immediately bent to help me up and apologized that their shove sent me to floor. “Why didn’t you move?” she asked. “I thought you were ignoring me!

I’m deaf“, I explained. I watched as all the color drained from her face and was replaced with horror and self-recrimination. (Not sure what color horror is but I saw it her face, clear as day). She immediately apologized over and over and even had big tears in her eyes.

THIS person was really easy to forgive. Yup, they screwed up. (I mean, who goes around shoving total strangers?) They said they were sorry and made it obvious they were mortified and repentant. I felt no compulsion to beat them with my cane. They even called themselves an “asshole” (which saved me the trouble). I thought about the experience the rest of the day trying to figure out how to insure that it didn’t happen again. However, I did NOT spend the rest of the day being mad at this person.

Two different scenarios and both having to do with my acquired disability. Something I never signed up for. One was hard to forgive, and the other was easy. Yet, both required me to forgive them because I have enough stuff going on in my life without hanging on to extra “weight” that I didn’t need to be dragging along.

I’ve always thought it would feel pretty satisfying to beat someone with my cane who deserved it. I just wasn’t sure jail time was worth it. The older I get, the more I understand that forgiving others isn’t for THEIR sake, it is for YOUR sake.

I hope you can learn to forgive others when they do something crappy or hurt your feelings about something to do with your own challenges. It isn’t easy, but forgiving them is better for YOU. Living a life as a differently-abled person is hard enough without adding another difficult layer to day-to-day life. Someone totally deserve a confrontation and a major telling-off? Put the cane down and walk away.

Well… take the cane with you as you may need it. But no beating!

Miller, R. S. (2014). Intimate relationships (7th ed.). New York: McGraw Hill Publishing

©2018 Personal Hearing Loss Journal

L. Denise Portis, Ph.D.

New Twist on an Old Fable

Townsend version of Aesop’s Fable: The Crow and the Pitcher

A crow perishing with thirst saw a pitcher, and hoping to find water, flew to it with delight. When he reached it, he discovered to his grief that it contained so little water that he could not possibly get at it. He tried everything he could think of to reach the water, but all his efforts were in vain. At last he collected as many stones as he could carry and dropped them one by one with his beak into the pitcher, until he brought the water within his reach and thus saved his life.

Moral: Necessity is the mother of invention.


I have the privilege of hanging out with numerous people with disability. Some are students, some are colleagues I work with at Anne Arundel Community College, and some are individuals I know from various community advocacy groups. One thing I have learned about people with disabilities,

“Where there’s a will… there’s a way”

This “will” is what this Aesop’s fable of the Crow and the Pitcher reminds me of as I have seen time and time again, people with disabilities finding a way to accomplish what they need to do with whatever means available to them and within their own power.

I was walking towards an “accessible” bathroom with a young woman who self-identified as a “little person”. I normally have a rolling briefcase trailing from my right hand and a service dog in heel with the leash in my left-hand. As we approached the bathroom, I readied myself to  disengage myself from my rolling briefcase and pull the bathroom door open. Before I could do so, the student yanked one of her textbooks out of her book bag, stepped up on it, and pulled the door open. She held it open for me and never missed a beat… continuing to talk about what we were discussing on the way to the women’s bathroom.

I, myself, do things that I have simply learned which allow me to be independent. However, this example stuck with me a long time. The young woman was accustomed to doing this and obviously had practice. The young woman’s “normal” reaction was an expectation to do something NEW and NECESSARY to accommodate her need.

Another example: One day on campus as I was preparing for class, a student whom I have met only in the hallway a few times after exchanging a cheerful greeting, poked her head in the door and waved at me. This student uses a wheelchair. I walked over and realized the issue before she even opened her mouth. Right outside this classroom is a CRAZY women’s bathroom that has an entrance that is impossible for any person with mobility issues to get in and out of without assistance.

Need me to get the door?” I asked.

Yup!” – “Thanks!” she whispered with a knowing grin.

Later that week I saw her in the hallway again. This time instead of only a cheerful greeting in passing, she stopped me and told me thank you again. Even though the other bathroom on the third floor where we were was more accessible, it was much further from her class and she lacked the time necessary to go down that far to avoid being late for class. I explained to her that I had to have help with this particular door too if I had my service dog with me. We both giggled at how ridiculous it was that we required assistance for that bathroom. (Do you know I still don’t know her name? Comrade in arms, but clueless as to who she is – smile). The day I got the door for HER, my service dog was waiting patiently behind me in the classroom so I was able to assist without any hoopla or drama.

Just in case you are not a long-time reader of Hearing Elmo, I have Meniere’s disease (a vestibular disorder) and “hear again” with a cochlear implant. I also have post-concussive syndrome. I have made numerous adjustments and changes within my home, car, and office to eliminate my need for assistance. Since I can’t raise my hands over my head without swooning, everything I need in the kitchen is on a shelf I can reach safely. My shower has everything I need eye level instead of up higher on the rock-faced shower wall. I have chair-rail molding all over the house so that I can grab it with my fingers if I am walking and get wobbly. All my appliances and drawers that “stick” have a tug on them so that Milo (my service dog) can open them for me. I could go on and on, but I don’t want you to miss that the reality of ANYONE with disability or chronic illnesses, is that they are accustomed to doing whatever it takes to be as independent as possible.

Please Keep in Mind

Will you do your best to remember one thing? If a person with disability, chronic illness, or invisible condition asks you for assistance, you are their LAST resort. They have thought of and planned for everything that they can to be as independent as possible. However, there are times that we just need help.

Don’t make a big deal about helping, just do it calmly and with grace.

Don’t discuss the details or “unfairness” of the person needing your assistance unless THEY want to discuss it.

Don’t feel sorry for us.

Don’t be super dramatic and bring attention to the issue.

Where There’s a Will, There’s a Way

Earlier I stated, “where there’s a will, there’s a way”. If you live with disability, chronic illness, or visible/invisible conditions, I understand when WILL disintegrates. I work as hard as the next person with disability to be independent and strong. Yet… there are times I just throw up my hands and yell, “SCREW this! I give up!

I cannot speak for others because we are all SO different. Even people who share the same diagnosis may:

  1. Have different symptoms
  2. Take different medications
  3. Have different responses/side effects to those medications
  4. Have more support than you do
  5. Have less support than you do
  6. Have a different personality style and traits
  7. Have a different developmental history than you do
  8. Have different faith practices than you
  9. Have different co-morbid diagnoses (Other conditions in addition to their primary challenge)
  10. Have cognitive issues as well that impact problem-solving

I can say that for ME, the best thing I can do after having a “Screw this” kind of day, is to go to bed. And yup… I mean I do so even if it is only 5 PM! I always feel better, have a clearer head, and a renewed WILL after getting some rest.

I am really tired of being TIRED after having to find and produce my own accommodations for various activities. However, a fresh perspective (after a good night’s rest) nearly always renews my inner warrior and allows me to face a new day willing to do whatever I need to in order to be a thriving, surviving disability advocate.

In the comments, I welcome other examples of how you have learned to make things accessible for you.

Warm hugs and virtual “high 5’s” to my fellow differently-abled people!

© Personal Hearing Loss Journal

Denise Portis, Ph.D.

Excuses are Exits From the Freeway of Life

 John Maxwell said, “Excuses are exits from the freeway of life”, however I first heard it in church on Sunday from my pastor, David Orr.

I thought it would be a perfect topic to expound on as I “re-launch” Hearing Elmo after a year-long (forced) hiatus.

Just a little bit of background information in case you are new to “Hearing Elmo”. At the age of 6, I was struck by a car and suffered a TBI, fractures, and permanently damaged my left ear/hearing. At the age of 18, I had the last of multiple surgeries to try and restore the hearing in my left ear. By the time I reached the age of 25, the hearing in my left ear was gone and the hearing in my right ear was already at a severe to profound level. I was diagnosed with Meniere’s disease at the age of 31 and I have suffered numerous concussions. Frankly, I am very blessed. Meniere’s disease alone can completely debilitate and disable an individual if the symptoms are bad enough. I wobble when I walk, but I am able to work and stay involved.

That doesn’t mean it is easy.

I don’t know about you, but having a number of disabilities also means that I “crash and burn” frequently. By 5-7 PM (my “witching hours”) I’m a puddle of senseless, zombie-like goo. If you suffer from a chronic disease or invisible/visible illness, fatigue is one of the most common symptoms. Not just a “GEE, I’M TIRED”, either. This is a major negative impact on normal function, a type of extreme tiredness and weakness.

Who experiences debilitating fatigue?

Multiple sclerosis: 91% of those diagnosed

Arthritis disorders: 73% of those diagnosed

Pain disorders: 94% of those diagnosed

Sensory disorders (functions of any of the senses): 89% of those diagnosed

These are just a FEW of the numerous disorders people struggle with each day. Many, you may not even know they have the diagnosis. They hide it well and are aware of their own “witching hours”, staying home to recuperate as needed.

Excuses, excuses

So back to the topic…

Don’t you think that people with disabilities have every right to their excuses for exiting the freeway? I feel pretty entitled to saying “no, I can’t do that”, frankly.

As a matter of fact, after my hearing was completely gone and Meniere’s disease made it impossible to stand without wobbling, I had a pretty concrete plan of action to isolate myself, quit life, and whine loudly while doing so.

That changed in the year 2000 when I discovered the world of advocacy and activism. As I got to know folks with challenges that far-exceeded my own, yet discovered how involved they were in life, I knew I needed to stop exiting my freeway. I will never forget the email exchange I had with “Sheila” in May of 2000 in an online support group for people with disability and depression. Sheila is a quadriplegic and is also a breast cancer survivor. Sheila blogs, works as a mentor, and makes a nice amount of $$$ as a graphic designer part-time. To my shame, I found MANY people who are active in life and ditched the excuses long ago. Those excuses I felt rather entitled to, suddenly bore little weight.

As I learned to stay on my freeway, I learned that discovering and testing coping mechanisms and accessibility options was a real growth catalyst. When my “CAN’T” became more of a CAN DO, my overall outlook on life changed, too.

Rest Area/Welcome Center

Don’t be unrealistic. Even “able-bodied” people need to rest. Those of us with challenges beyond the norm, likely need even more rest. I make a “good night’s rest” a major priority in my life. Without sufficient sleep, my witching hours move from “5-7 PM” to noon! Like many who live with disability, at times my body just says, “ENOUGH”. I wisely take the next “exit” and rest as needed. (If you’ve never read the SPOON theory, it is well worth the read). As you really get to know yourself and early warning signs, you can even plan your “rest stops” so that you are quickly back on the freeway.

I have a friend in a Meniere’s disease support group. Her disease is one of the more severe forms. One exchange she had with me was a personal epiphany for us both. We were instant messaging back and forth and she was so down about not being able to make a difference. She couldn’t work, felt she wasn’t a good mom, had days where she could only crawl around the house, and was super tired of delivery since she couldn’t cook. However, during the course of our conversation, she realized that she was in daily contact with several others who suffered from severe Meniere’s symptoms. She knew — without a doubt — her daily notes of encouragement meant something very profound and meaningful to these people. She may only have been able to “reach out and touch” someone through her computer while laying in a recliner, but those daily messages… MATTERED. She then realized that for her own circumstances, she was moving forward on her own freeway. My housebound friend with a disabling condition is a very encouraging and instrumental woman of purpose.

I hope that no matter where you are in your own journey, you recognize the necessity of exiting to REST, but also find the entrance ramp to the freeway ASAP.

L. Denise Portis

©2018 Personal hearing loss journal

The Me I Want to Be

The Me I want to be

First off, please allow me to apologize for my web absence. I am in the final stages of my dissertation and to say “my life is not my own” is merely a way of downplaying how incredibly hectic my life is. I am also a little peeved at myself because writing is quite therapeutic for me. That I have allowed so much time to pass since writing for Hearing Elmo, makes me quite anxious to get this part of my life over with so that I may continue doing what I love doing.

I am in a “stuck” place in my dissertation. The community college where I teach is closed right now so my “stuck” place is not something a trusted colleague (who can act as a statistic tutor) can help me with because no one is checking their email until January 2nd. I can’t blame them. The chair of my committee is also “offline” until January 2nd. Instead of twiddling my thumbs and worrying over my “stuck” place, I decided it was time to start writing again for “fun”. I need to keep Hearing Elmo a part of my life because it really does help keep me sane. (As do all your comments and emails).

So in this unexpected time I found, I decided to pick up a book I haven’t read in several years. Ortberg has long been my favorite author. His books do not dumb things down and they have been a source of challenging myself to be a better person. I just finished re-reading, “The Me I Want to Be”.

I like to review my day as I work on drifting off to sleep each night. (It’s work because I don’t unwind easily). Cuddled up with all my pillows and my service dog at my side, my bed is my happy place. As a person who is differently-abled, fatigue is a very real enemy. So to say my bed and I get along really well is an understatement!

Part one of Ortberg’s book is entitled “Finding My Identity”. For a very long time I went about this SO WRONG. I was much more prone to identifying with how others viewed me or my how they viewed my role. I don’t have a whole lot of people in my life who tell me “Denise, you rock”. I have a whole lot of people who work very hard to keep me humble <big grin>. I think many people who are critical, do so with some self-appointed license  to keep you from thinking more of yourself than you should, that you recognize all your weaknesses, and that somehow by pointing it all out that the person will take it to heart and actually become a better person.

Well of course it doesn’t work that way. We tend to dwell on the negative unless we have purposefully determined to accentuate the positive. So at the tender age of 25 when faced with “finding my identity” as a newly diagnosed person with disability, I took “broken and not worth much” to heart. I think this is the reason I am prone to describing myself as differently-abled versus disabled.

I recently was interviewed by a non-profit in town who serve the immediate community as a CIL (Center for Independent Living). I think I must have written “differently-abled” in my cover letter, as it became clear that something they wanted to make sure I knew before releasing me from the interview to deliberate on whether or not I can act as an effective board member, was that they did not approve of my wording.

As a matter of fact, the two women on the board nomination committee told me, “I am a proud disabled woman”. They explained to me how important language and the words we choose are. I was hard pressed not to roll my eyes. I explained (albeit in a slightly defensive manner) that people with acquired disability may self-identify however they wish. I tried to explain that to me disabled meant NOT able or the opposite of able. If you literally check out the Latin prefix it means something negative. (Check out what this site says, and this one). I explained that I work with young adults and that it has been my experience this population more readily identifies with differently-abled than disabled. “Yes, I know disability is the wordage our laws use and therefore we should use this word in legal matters, accessibility concerns, etc.” The group of 3 just shook their had at my “excuse” and I left feeling as if I could NOT help them as a board member since they seemed incapable of even recognizing the freedom of self-identity within their own population.

Part of “finding my identity” revolved around owning being differently-abled. Recognizing my limitations and when possible, finding a way around them – or THROUGH them – was essential in cementing my own identity. The fourth part of Ortbeg’s book is entitled, “Redeeming my Time”. One of the sections he discusses is “recognizing your primary flow-blocker”.

Ever met someone who just took the wind out of your sails? Everything is going great and your day is off to a super-duper start, only to spend four or five minutes with a total mood assassin. Ortberg encourages us not to eliminate all difficult people from our lives. Why? Well, difficult people help us grow. I want to continue growing and hope I never become stagnant. This doesn’t mean you have to be best buds with the difficult people in your life. As a matter of fact, I believe and support healthy boundaries. If not for any other reason, I appreciate the difficult people in my life simply because they act as a warning of what I do NOT want to be. That’s right. I am actually grateful for the negative and critical people in my life. They are a flashing, neon-colored caution light. If I do not keep a check on my attitude, I too, can be a negative and critical person. It’s easy to slip into a pity party when you have physical and mental health challenges. How I respond to those kinds of people is important, too. Ortberg said, “Other people don’t create your spirit; they reveal your spirit” (Orberg, 2014).

Ortberg ends his book with finding your challenge and embracing it. For people who live with chronic illness, visible or invisible disabilities, or mental health issues, it isn’t hard to find your challenge. It’s right there, “in your face”, each and every day! Embracing does not mean it defines you. I embrace my challenges of hearing loss, Meniere’s disease, and Major Depressive Disorder. Yet those three things do not define me. Instead I hold them close because they are a part of me. I cannot pretend they are not there. My self-identity, however, comes from seeing the strong and independent woman who emerged from those challenges.

The Me I Want to Be

Are you unhappy with the current course of your life? Sometimes the best way to make a change is to simply envision who you want to be. If the people you are hanging out with, the job you are working, and the influence you desire are not “happening” for you, change is in order. It may take you awhile. It likely took you YEARS to become the Me you no longer want to be. It may take years for you to really see a new reflection in the mirror. Don’t let that scare you. It can take time.

I will end this with a super happy announcement. My daughter gave birth to my first grandchild on October the 26th. Another way we can be sucker-punched with the impact of our own influence, is to be introduced to someone brand new. I want to be a positive influence on my granddaughter.

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Samantha Jean

Please feel free to share your own stories of how you became the “me I want to be”. As always, I value and encourage others who live with visible and invisible disabilities and illnesses to write for Hearing Elmo. Or simply leave a comment!

L. Denise Portis

© 2017 Personal Hearing Loss Journal

Your Responses Matter

I need your help. I am in the data collection stage of my dissertation and need online survey participants. The focus of my study is Posttraumatic Growth in persons with acquired disability and chronic conditions. Below, you will find the formal invitation to participate. If you have followed this blog, you know that I firmly believe and hopefully model that people can and DO lead successful and impactful lives even after the diagnosis of an acquired disability, chronic condition or mental health illness. Individuals whose lives have been forever changed by a “new normal” can and DO give back to their communities and make a difference in their world. It is my hope this foundational survey research will allow future studies focusing on ability, impact and growth, of individuals like those in our disABILITY community. I hope you will consider participating and sharing the information below in emails, FaceBook, your own blogs, and word-of-mouth referrals. Although the provided instructions suggest the online survey could take up to 20-30 minutes, the participants who have completed this have spent 10 minutes or less. I need your help both as individuals and to pass this opportunity along to others. I require a minimum of 135 responses so every completed survey counts! Thank you!


I would like to invite you and your contacts an opportunity to participate in a study about acquired disability and posttraumatic growth. I am a doctoral candidate at Walden University and this study is part of my final coursework towards a Ph.D. in General Psychology—Teaching Option. The reason for this study is to discover if people now living with an acquired disability experience posttraumatic growth, or positive change after a difficult life event such as the diagnosis of an acquired disability.

Participation in this study is completely voluntary. To participate, you must be at least 18 years of age, able to read and write English, and be able to get to the Internet. You must be at least 12-months past the difficult life event that produced an acquired disability or diagnosis.

There is only a minor risk involved in participation. This may include the emotional process of determining how acquired disability has changed your life as you respond to the questions in the survey. The possible benefits of participation may be the recognition of the positive changes that have become a part of your life since diagnosed with acquired disability.

Should you wish to voluntarily participate in this research study about posttraumatic growth and acquired disability, you may click on the following link and it will direct you to the first page of the study. https://www.surveymonkey.com/r/BFBP2F3

You are encouraged to share this invitation with others who also live with acquired disability. People taking this survey may know me as a disability advocate and Vice-chair of the Anne Arundel County Commission on Disability Issues, a part-time psychology instructor at Anne Arundel Community College, an Online disability blogger at Hearing Elmo, a client/mentor at Fidos For Freedom, Inc., or as a participant of Online disability communities. None of these roles are connected to this study, and the survey information is separate from these roles and used solely as part of a dissertation study.

Thank you for your time and willingness to share this opportunity with others who live with acquired disability.

Denise Portis, M.A.

Doctoral candidate, General Psychology—Teaching Option

Walden University