“We Are Not Given a Good Life or a Bad Life”

“We are not given a good life or a bad life. We are given a life. It’s up to us to make it good or bad.” (Devica Fernando)

“We are not given a good life or a bad life. We are given a life. It’s up to us to make it good or bad.” (Devica Fernando)

I believe one of the most self-destructive things a person with disAbility can do is to compare themselves to other people. I have even heard people with disAbilities compare themselves to other people with disAbilities… seemingly weighing “who has it worse“. Y’all? I have done this myself. Believe you me – I get it.

I think people who live with chronic illness or disability do this for one of two reasons:

  1. They are trying to remind themselves they are better off than “so-and-so”
  2. They are trying to discount the perseverance and courage of another because there is “no way they can understand YOUR life” because you have things much worse.

Let me start with the first one.

If you have “stuff”… physical, emotional, and mental challenges, don’t ever compare yourself with someone else also struggling. This is especially dangerous if you end up invalidating your own difficulties. The life challenges you deal with are just as legitimate and real as those faced by other people.

Frankly? Every person you know is fighting a battle you may – or may not – know about. This is the reality of life. Those of us “dealing” with life’s challenges were not given a good life nor a bad life. In spite of what I’ve heard others bellyache, not even God is at fault for your “good or bad” life. As Ms. Fernando stated, “It’s up to US (emphasis added) to make it good or bad”.

So (temporary) pity parties are not allowed? Well of course they are allowed. They are also



even beneficial.

You just can’t stay there wallowing in self-pity. If you believe in the power of “psyching yourself up”, simply do so by focusing on your own life and don’t compare yourself to others. It’s OK to not be OK. It’s not OK to think you should be OK, because compared to others you’ve got it pretty good. The struggle is real and we all have struggles.

Before I leave this point, allow me to just say that I am “born again” about sharing and caring with other people who live with chronic illness and disAbility. We can learn from each other. My greatest “teachers”, those who by example or explanation, coached me to try a different approach, a new assistive device or tool, or to adopt a new mindset to help me succeed.

The second point can be much harder to avoid. As a person with disAbility (late-deafened) and chronic illness (Meniere’s disease), I sit in meetings with my peers feeling frustrated when someone makes a really lame excuse for not doing something well or refusing to take on a responsibility. I think, “Well for love of cracker jacks, who goes around saying they couldn’t complete a task or responsibility because they are just to busy?” (Yes. I really think this LOL).

Who am I to say that someone without VISIBLE disAbility or chronic cannot use “busy-ness” as an excuse? Maybe they are dealing with something you do not know about. Maybe…

Their child has an unhealthy addiction.

They are scrambling to make room for their ailing mother who can no longer live alone.

Their most significant, personal relationship just imploded.

Their doctor wants to see them to re-take a medical test.

At the community college campus where I work, inclusion is the word of the day (and week, month, and year). Yet inclusion – includes – people who seemingly do not fit into a defined diversity group. Diversity implies all the ways we are different. I don’t know anyone breathing who isn’t different in some way. Inclusion, means to universally INCLUDE.

This past week I retired my 2nd service dog from Fidos For Freedom, Inc., specifically from working with me in the classroom at AACC. We started a major demolition and construction project this summer. Unfortunately, after working nearly 3 months on desensitization, Milo is unable to cope with the loud noises and “mini earthquakes” to focus on his job and assist me. I taught two classes this summer (Developmental Psych and Intro to Psych) and they were the hardest classes I have taught to date. I have had the assistance of a service dog in the classroom for 14 years! (Milo will continue as my partner in all other areas and is not retired full-time as of yet). Having to carry all of these assistive devices to work just to be independent in picking up things I’ve dropped or walking without wobbling, has been an emotional, mental, and physical challenge for me.

A couple of weeks ago during one of the breaks I offer (as it is a 4-hour class!), I ran into a colleague who teaches in a different department. I know her well enough that when I said, “Hey! How are you doing?” she answered honestly.

“My life is hell. This is the hardest summer session I have ever taught.”

I will admit my first thought was a flurry of reverse-prejudiced “OH BRUTHER” rationalizations.

I mean… she is healthy and athletic, and in her prime. She has tenure. She is well respected. Her expertise is valued. How is it that SHE is having the toughest summer? She doesn’t have any disAbilities or chronic illnesses! There I went with a silent “eye roll” and judgement simply because the things I was dealing with in adjusting without a partner were so much more IMPORTANT than anything she could bellyache about!

I immediately (mentally) slapped myself up side the head (though likely would have benefited from the real deal), and instead asked, “Well gee! What has been going on?”

Come to find out anything that COULD be going wrong in her life, was indeed going wrong. Her teen daughter was hospitalized and put in long-term care for depression. It came from out of nowhere and no one in the family had seen any warning signs. Early in the summer, she nearly lost her to suicide. Add to that long-term plumbing issues, car troubles, financial woes, and an internet stalker (I kid you not) rounded out the “list”.

Nope. This fellow teacher does not have any disabilities that I am aware of, nor any chronic illnesses. Yet, she too, has been struggling all summer and doing her best to cope. She, like me, chases down and hog-ties that professional smile to paste on right before entering a classroom. She is distracted and suffering from insomnia. She has cried many tears. Embracing true inclusion has taught me to recognize that her struggles are just as real as mine are. I love what Jordan (2011) said in the Diversity Journal: “Inclusion involves bringing together and harnessing these diverse forces and resources, in a way that is beneficial. Inclusion puts the concept and practice of diversity into action by creating an environment of involvement, respect, and connection—where the richness of ideas, backgrounds, and perspectives are harnessed to create business value.”

My colleague’s “stuff” looks different than my own “stuff”. It’s still STUFF. Encouraging and supporting everyone, benefits, well… EVERYONE. No one has everything going for them; a life without problems, fears, or struggles. However, everyone has something going for them.


Denise Portis

©2018 Personal Hearing Loss Journal



Overcoming It

A hero is just someone who is brave a little bit longer

For a former “farm girl”, I recognize it goes against the grain to say I HATE RAIN.

Besides… I don’t HATE rain, I hate the consequence of rain.

Not the consequence of providing necessary water to growing plants.

Not the consequence of washing the world clean.

I hate the consequence of navigating a rainy day. It promises bruises, headaches, falls, and sudden yelps and “CRAP, woah!” exclamations.

The irony is not lost on me that although I am profoundly deaf (when not wearing my cochlear implant),

although I have post concussive syndrome from numerous falls,

although I have a bum ankle that I badly sprained 4 years ago and wish to God I had broken instead,

… Meniere’s disease is the battle for which I must “don the cape”. Something that falls into the “invisible illness” category. A disease/disorder with no cure and few agreed upon symptom smashers.

Meniere’s and weather changes are incompatible. On bad weather days I sometimes have to psych myself up and recognize that I cannot change the weather today and I cannot cure my Meniere’s. What I can do is “don the cape” and make the best of it.

Today I had my heart set on going to training at Fidos For Freedom, Inc., the organization from which I received both of my service dogs. My current service dog, Milo, loves going and the extra practice does us both good. I usually don’t wave the white flag on a day until I actually get up and go look at the sky. Lord knows, our weather forecasters are not very accurate about a “3 day” or “5 day” outlook. (Super strange that it seems the m0re technology available to us, the more meteorologists miss the forecast). I usually know it’s raining outside as soon as my feet hit the floor. I certainly cannot hear it <grin> as I don’t “have my ears in yet”. This morning I knew as soon as I swung my feet out of bed that it was raining. It’s fairly easy to guess when the entire room is spinning and the floor seems to be missing under my feet.

I always start out strong. I CAN DO THIS. I let the dogs out and start my coffee. Something I do each and every morning. No matter that I am doing it while hugging the nearest wall or counter.

I didn’t sink to the floor this morning, sobbing, after letting the dogs in for breakfast. I hung on to the chair rail molding on the wall and shook, said a few choice words, immediately asked for forgiveness and pled in genuine prayer to help me let go and walk to the kitchen. I’ve learned that caving to the despair only exacerbates my symptoms.

So I’m not going to Fidos For Freedom, Inc. today even though Milo-bear is looking forlornly out the window wishing we weren’t at home.

Please do not misunderstand this post. I’m not looking for sympathy. I am not inviting you to my pity party. I simply want to share what it is like to live with a chronic, invisible illness. It might also surprise you that I am glad





… at peace with having this disease. If I did not have Meniere’s disease, I know that I would not have the heart and passion for people who live with invisible illness. When I am the one tagged to produce a post for “Hearing Elmo”, I do not do so from the keyboard of an expert. I don’t have the answers. I don’t have anything profound to share today.

NOTE: Like to write? Want to share your journey? Hearing Elmo welcomes guest writers!

Instead I can salute and encourage all who must “don the cape” and simply make it through today. Overcoming one hour at a time and making the best of it. Shauna Niequist said, “… what I can do is offer myself, wholehearted and present, to walk with the people I love through the fear and the mess. That’s all any of us can do. That’s what we’re here for.” 

We are super heroes because simply “overcoming it” is our default and salvation. It’s not always pretty and I don’t always “rock my cape” with grace, drive, and power. Sometimes I just feel pissed. But…

I’m overcoming it. I’ve had practice. I’ve got this.

And friend? So do you.

Nope. It ain’t easy. You can overcome it. You have before. You will today. “Don the cape” and get through today.

L. Denise Portis, Ph.D.

© 2018 Personal Hearing Loss Journal

The Selfless Practice of Self-Care

It’s strawberry season! My little city just had a strawberry festival, and although I was not able to attend (there was a torrential rain), my husband picked me up some strawberries as he knows my fondness for anything “berry”.

Lately I have been thinking about “self-care” a good bit. I recently made a choice to not do something on behalf of someone I care for and I knew (from their reaction and words) how much I disappointed them. With strawberries on hand (and no dried beans or walnuts as the illustration normally requires), I decided to re-do the illustration with some different elements. I had rice, almonds and now strawberries. Hey… you work with what you have, am I right?

I hate disappointing people. Especially people I really care about and enjoy being around. I have only recently earned a self-awarded “certificate of self-care advocacy”. My normal response to being asked to do something I cannot do, should not do, and will sacrifice my health/mental health to do was “sure! No problem!” and a default. It’s hard to practice self-care at times, because others misunderstand and may believe you are being selfish, self-pitying, or lack compassion for others. I have learned to “stick to my guns”, but it doesn’t mean I don’t recognize and feel another’s disappointment in me. The flip side? I am not disappointed in myself.

My Re-Make of an Old Illustration

So let’s say the grains of rice are all the little things we do each and every day. They are choices to spend 5-10 minutes doing “this or that”. They are relatively unimportant tasks that if left undone, the world does not implode.

The almonds are more important things. I’m going to call my “nuts” family <grin>, close friends, advocacy groups, work and professional life, and community service/faith practices.

The strawberry is me. This big, luscious (- hey… jus’ sayin’) berry includes my physical health, mental health, emotional well-being, and spiritual well-being.

In the jar on the left <points up>, I filled my day/life with all the inconsequential things first, then the “nuts” in my life, and finally me – a big, beautiful strawberry…

… that doesn’t fit.

The jar on the right has the berry going in first. The rice and nuts settle around it just fine. (Yes, I measured and each jar has equal amounts of rice and almonds). If you look carefully, not only did everything FIT, there is some left-over room at the top.

Mayhap poorly illustrated, the point is that if you do NOT put yourself first everything will NOT fit.


Folks with disability have a hard time with self-care. Let’s stop and discuss possible reasons:

  1. They feel guilty already because they may require another’s assistance and time to do normal tasks.
  2. They rarely have 50/50 friendships. They fear they will be labeled as “takers” and not “givers”.
  3. They fear a lack of control over their lives. Instead, they sacrificially try to help others first, ultimately hurting themselves.
  4. They want to be useful and have a life of purpose.
  5. They believe to say they cannot do something admits defeat.
  6. They work WAY to hard trying to live up to the accomplishments or abilities of someone else who shares their diagnosis but not their life. (No two people are alike).

One of the hardest lessons I’ve learned is that I cannot live a life with purpose and make a difference if I do not take care of myself FIRST. It’s not selfish. It’s selfLESS. If I do not take care of myself, I am useless and unable to do anything at all for anyone else. I have made the mistake of saying “yes” to something with too high a price tag, only to suffer for days, weeks, or months physically, mentally, emotionally, and spiritually. When I practice good “self-care”, I am actually able to do MORE for others.

Now you may be thinking that’s all fine and dandy, but if I am saying “no” to things in order to protect my energy levels, health, and mental health, aren’t people going to really stop seeing a person with disability who CAN have a life of purpose and instead see someone DISABLED?

Not if you handle turning down requests the right way.

You can’t babysit your niece this weekend because you know you need some extra rest? Ask if you can babysit with a 7-10 day notice so that you can rest up in ADVANCE and help with babysitting.

You (and others) were asked to volunteer for a community service opportunity that would mean an entire day of being in a big crowd? (With Meniere’s disease, I can only take so much jostling). Ask if you can donate snacks for the breaks. Ask if there is anything you can do behind the scenes.

Work is having a “walk a mile in her shoes” event. (Everyone wears heels and walks a designated route and distance to support rape, sexual assault, and domestic violence programs and survivors). Y’all? I can’t walk 3 feet in heels with a balance disorder, let alone toddle, stumble and do face-plants all the way around a track with my colleagues. This doesn’t mean I can’t: Invite others to participate, give extra credit to students who participate, volunteer to hand out bottles of water (and bandaids-snort), and cheer along the side-lines. 

Let’s say you really like visiting with a person and care about them a great deal. However, what if they have baggage (in the form of spouses or intimate partners) that may accompany your “person” who is toxic to you and everyone you know? Offer to meet with the friend for a one-on-one lunch or visit. You set the safe boundaries and ultimately enjoy your time with them.

Work related requirements: I have learned that if a meeting or activity is required and yet will not be fully accessible to me (hearing, space to move safely, etc.) to request accommodations WITHOUT APOLOGY. However, then I work hard to be fully invested and participate with enthusiasm. 

In closing, I wanted to share a final thought. This one I am still working on and currently fail to do it right more than I do it wrong.

Don’t apologize for practicing self-care.

I worry too much about what people think I suppose. I tend to TMI (too much information) after declining an invitation to participate in something and make excuses when none are necessary. I’m trying to learn not to say:

I’m sorry I can’t help with that. I know I’m letting you down.

and instead say,

I know myself well enough I cannot do that safely. I am trying to practice self-care. May I do “this (fill-in-the-blank)” instead?

Develop a self-care plan. Chart out (it helps to see it, I promise!) what you can do in a day and what you can do in a week. Stubbornly defend your right to say “no” to something when your chart is already full. Y’all? Don’t scratch out that necessary NAP to do a task for someone else instead. If your nap is needed to re-charge, make it a priority.

Take care of yourself! (A great article on what self-care IS and IS NOT – CLICK HERE).

L. Denise Portis, Ph.D.

© 2018 Personal Hearing Loss Journal

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


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


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

When I’d Rather Beat Them With My Cane…

My kids L to R
Kid-in-law Khris

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.

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.


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