Careless Words

As a person with disABILITY, like any within a diversity group, I have experienced harm from words. Before you stop reading and think I’m going to blast the abled population, let me just say that people with disABILITY are often the worst offenders.

If I asked every person in the world to throw up their hand if they have experienced words that have…

hurt them

demoralized them

made them wince (inwardly and outwardly)

caused a “hitch” in your breath because of the unexpectedness

made you cry

made you SWEAR

caused you to “shut down”

forced you into isolation

triggered you to “fight back”

or scarred you for life…

… the sudden uplift of hands worldwide would cause a major shift in wind currents and likely tilt earth off its axis. Seriously. We’ve ALL experienced this.

I use the phrase “experienced words that have…” intentionally. Not all of us HEAR well and many who do hear well don’t listen well. The damage of careless and mean words is not something simply heard or speech read on the lips of fellow human beings. The words are EXPERIENCED. This experience is why damage is done. We take it in. We stew on it. We watch those words ping-pong back and forth in our brains and hearts like a pinball machine, drawing blood and causing wounds from every “hit”. We are scarred.

When my children were younger I would remind them that human beings can FORGIVE but we cannot FORGET. Our words have such power – it’s just freakin’ scary! I am an impulsive speaker. I say things without thinking through and that impulsivity causes regret more times than I can count.

People have told me things before that I needed.

Perhaps I was being a butt-head and careless with my own words. They put me in my place. Maybe it hurt but it was a disciplinary kind of hurt and I walked away wiser and un-scarred. (By the way, all of us have people in our lives whose very positional relationship with us allows them this power).

People have given me true (heartfelt) constructive criticism. This means the intent was clear, precise, and helpful. I am sensitive enough that even this at times can be hurtful, but it doesn’t WOUND.

Those types of experiences can hurt… but they aren’t spirit-murdering (a new word I learned at an Anne Arundel Community College workshop this week). I would like to argue that CARELESS words are never EVER helpful.

The word itself means, “not giving sufficient attention or thought to avoiding harm or errors”. Careless words can be both intentional and direct. They can also be unintentional and “oopsie” moments. Either way they hurt. They wound. They leave scars.

At the end of the semester a handful of students were sticking around to chat after the final. They were lovin’ on Finn, my 3rd service dog in training (SDiT),

… and just “messing around”, hangin’ out, and talking. One of my students muttered something and *I* (emphasis on that I, for I am deaf – grin) heard the collective indrawn breaths. So…

I nosily asked, “what just happened”?

The student said, “Good God, did you hear what I said?“, acting both horrified and astonished.

“Well, no,” I replied, “but I heard y’all’s REACTION”.

Her eyes filled with tears and she admitted, “I said something contradictory and stupid and then said, ‘GAWD that was bipolar of me'” She then slapped her hand over her mouth and looked around at the group with big eyes. The group all immediately patted her back and assured her that “we ALL say stupid things”, and “we knew what you meant”. She vehemently waved all their support aside and said MUCH louder…

“No, NO. You don’t understand! I AM BIPOLAR. I just slammed myself!”

At this point, the floodgates opened and she was sobbing hysterically. It was contagious… of the 8 students standing there, five of them were in tears within minutes!

Do you know they stuck around for another 20 minutes and discussed the power of words and stereotypes? I just stood there in awe watching what I hoped was a little bit of my teaching rubbing off as they expertly dissected and dialogued about intent, carelessness, and harm.

OWN It

You are gonna spew careless words. Whether you speak with your voice or your hands, you are going to speak before thinking. Or… maybe you speak AFTER thinking but you simply don’t care about the damage you are unleashing.

Own it. If you care, if you want to minimize the damage, if you want to do better, if you are the kind of human being that understands the power of words, OWN IT.

Apologize if needed (and mean it)

Make amends

Strive to do better. Vow it!

Practice

Call it (when appropriate) when you see others do it

Follow up and use all five apology languages IN WRITING.

This last one I have learned the power of this conscious decision to OWN it by following up with a note. Whether it is a handwritten note, an email or text, etc., writing down a follow up with a person I threw careless words at is so important.

It becomes this tangible, concrete evidence of my regret and promise to do better. The injured party can re-visit it if they want. It may act as a future means of measurement to them about how far I’ve come in using words as weapons. For me, it acts as a literal pivot point from which I can measure my own growth, my own practice of intentional, encouraging communication.

Next week, I want to discuss how one goes about admitting and voicing that “ouch! that hurt”. If careless words can injure, we are all wounded warriors. What do you do or say if someone hurts you?

Have a great week y’all!

L. Denise Portis, Ph.D.

© 2019 Personal Hearing Loss Journal

 

 

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Chronic Pain (Part FIVE) : What Does Giving Up Look Like?

By guest writer, Deborah Marcus.

Part 1     Part 2     Part 3    Part 4

Photography by Deborah Marcus – At Duke Gardens 1/2014

It has been weeks since my last blog post for this series. I wish I had the energy and focus to write about everything I think through! We continue to await word on the first level appeal of the denial of my disability application. I have been incredibly blessed by many with the practical support that is allowing me not to be in a panic over covering my most basic needs and treatment expenses, at least for the next few months. I don’t fully know how to express my appreciation for this, but I hope it is felt by all.

 

I’d like to return to an element that continues to run through this discourse, on living and dying, on choosing to continue to live rather than contemplating and completing suicide. I have written about and spoken aloud the serious consideration of suicide, the culmination of feeling like I’ve been dying for a long while, with acute awareness of this in the past few years of unrelenting facial and head pain. I do not currently have that on the table as an option, and I hope I continue feeling this way, but it does not feel like it would never be an option. I’ve come face to face with some varied and intense reactions and responses to my expressions of thought of suicide. All come from a place of love, but some also come from a place of fear, and this can inadvertently have the effect of making the one discussing the suicidal feelings—in this case, me, but I daresay it applies across the board—feel a deep sense of shame and guilt.

 

Brene Brown has some good talk out there about shame, guilt, and vulnerability. Here is one: https://www.ted.com/talks/brene_brown_listening_to_shame?fbclid=IwAR2YxOI-EYys4X2Pi7Qzi9k65yO79pUEw1-UQpt5KLKdxGL-91Ptje1Czbs#t-942509

Photography by Deborah Marcus – Lenten Rose at NC zoo 2/2014

There was a moment recently that ties directly to this and got me thinking about what we mean when we say that someone is giving up, when they feel can’t go on and begins to actively experience suicidal ideation and perhaps takes those first steps to make a plan to end their life. In continuing to trial different treatments and drugs in an attempt to better manage my facial nerve pain, I’ve recently begun a high dose, long course of Prednisone, along with another drug on board and a third as a potential abortive of one set of symptoms. I’ve been on a moderate dose of Prednisone more days than not for the past 2 years, but this is much higher dosing with a step down plan over 30 days. The 20 mg daily has already had an impact on my body over time, affecting sleep, mood, and weight. There is something of a redistribution of fat or fluids in my face and belly. I don’t look like myself to me, even though my overall weight gain has been about 10 pounds in the past year. So it was with concern about the effects of increased dosing that my therapist commented to me on the challenges of managing appetite on Prednisone. He expressed concern and dislike that I would possibly have to deal with regaining control of my weight, which is already a challenge, once I finish this course of medication.

It’s really something how you can’t know when a moment is going to be so perfect as to open your mind and heart and let some fresh air in.

In the last 2, 3 years I’ve given up on myself in all kinds of ways. As I found myself deeper in depression with the constant, severe pain and vestibular issues and the fear that none of it would ever be alleviated, I also decided that it didn’t matter what I did or didn’t do anymore. If I couldn’t be comforted any other way, I would use the one tool that has seemingly served me throughout my life. Food. I have long been of two minds about what foods I put in my body. On the one hand, I’m this person who likes to eat organic food as much as possible, thinks about the welfare of the animals I eat, contemplates how food choices impact the environment. On the other, I eat Devil Dogs. French fries. Bowls of pasta and butter. OK so pasta isn’t bad for you in moderation, but here I speak of the comfort foods. The ones that don’t require my mouth—and face—to work too hard, that appeal to my taste buds, that fill my belly and calm my heart when I am over the top stressed. You may be thinking: many do that sometimes! Here’s the thing: in the giving up, though I didn’t get the gun, stockpile the pills, or drive to the high bridge to jump, I gave up on me by over and over again making unhealthy and uncaring choices about what I put in my body, with no regard to its impact. I no longer cared. What difference did it make, since I’m not going to be here long anyway if I can’t get a handle on things?

Photography by Deborah Marcus – Uwharries 2/2016

How different is this from the kind of suicidal ideation that gets everyone frightened, that prompts judgment and even anger in those who don’t want their loved ones to kill themselves? To be sure, the more extreme choices have the disadvantage of being quicker to kill. I can probably eat my junk foods en masse on a daily basis for quite some time before it creates the kind of conditions that lead to a downward slide towards extreme poor health and death. I suspect that it’s because of this, we don’t spend enough time talking about the slow, quiet dying when we talk about suicide. I recognized at this medical crossroads that it’s all the same in me. The thoughts of suicide, while I am not actively seeking to kill myself at this time, are still there as long as I care for myself in a manner that says nothing matters anymore. If I am going to work as hard as I have been to try to find solutions, to feel better enough to want to live the next 20, 30 years, wouldn’t it be good to be in the best health possible so I can enjoy those years I’m working so hard to experience? Tell the truth, Deb. There is no point in working this hard if I am not also doing the best I can to love myself. That includes cultivating a renewed mindfulness about how I look after myself. Part of the struggle with mindfulness is that I actively seek distraction from the relentless pain. I’ve practiced mindfulness meditation on and off over the years and I wonder if the reason I kept stopping was not only the psychic discomfort that can come with deep attention, but how it would make me acutely aware of my body, and my body has not felt well for a long time. Who wants to sit with that? Nevertheless, as I come to this fresh perspective, with the stars somehow aligning just perfectly for this moment, I am doing the work. I feel good about taking these steps. They also scare me. I’m doing it anyway.


If you would like to contact Deb personally, please find her on Facebook (Deborah Marcus) or at her website: https://visionsofsong.com

L. Denise Portis, Ph.D.

 

I’m Not Gonna Shelter in Place

I’m not gonna shelter in place. I’m just not. I’m a fighter. I can’t sit idly by and do nothing.

Now… before you FrEaK oUt on me, let me explain.

As I work on a college campus, I’ve taken plenty of workshops about active shooters, sheltering in place, and what to do in an emergency. I have friends who are cops, one in particular the chief of police in a nearby district. He was the first one to converse with me about a new mindset and belief that sheltering in place is not always the best thing to do. Evacuate, fight, run to a safe location as fast as you can AND DON’T KNOCK ANYONE DOWN AS YOU FLEE. It was an interesting concept to me and I got a lot out of the discussion. When active shooters and workplace violence became the “norm” for the United States, initial thoughts were to barricade and shelter in place. Now the experts believe that may not always be the wisest thing to do.

Frankly, I was relieved. One of the hardest things for me to do is sit back and watch and wait and HOPE FOR THE BEST. I’m learning and growing that sometimes I MUST do that, but it was very freeing to come to terms with other options if needed. I’m going to take this out of context a bit for the sake of this 2-part post. I wanted to give you this background though before continuing. I’d hate for you to be reading and thinking, “Um. Denise is off her rocker”.

(would never happen since I can’t rock – the things one gives up when you have a balance disorder *rolls eyes*)

Not Gonna Shelter in Place – When I Could Be Making a Difference Elsewhere

Lost my Dad 9/20/18
Training Service Dog #3, Finn
Retired Service Dog #2, Milo
Love having a grand-daughter

I’ve had the kind of year that I needed and took some “me time”. After finally completing my doctorate, I took some time to re-group. Even then, however, life — like LIFE does so well — continued and I had some great things happen and some not-so-great things happen. I found I had all this extra time and searched for ways to give back. (Temporary switch of gears) — One of the most frustrating things I have to deal with as a differently-abled person is accessibility.

Accessibility is more than having push-button doors, ramps, and handicapped parking. I work at a place (college campus) that is very accessible to me physically – with the exception of push-button doors on bathrooms – and we have a director of Facilities who does a great job of informing students, faculty, and staff about any campus changes that may impact mobility. We have internal professional development courses that work to educate and train other employees about persons with disability in the classroom and workplace. Accessibility also means, however, providing opportunities for people with disabilities to volunteer and work alongside other employees… professional development and opportunities to give back. My campus is outstanding in this type of accessibility.

My church is one of the most accessible buildings I have ever been in to date. Elevators, ramps, push-button doors (even on the bathrooms – grin), a looped auditorium (and if you have a hearing loss, I cannot begin to tell you what a huge deal this is), and numerous handicapped parking spaces are just a few of the ways the building and grounds are fully accessible. I even nominated them for a county recognized award one year, for truly they have gone the extra mile in making the church campus accessible on a physical level. They have always welcomed my service dogs. Chloe, who retired 2014 and passed away 2016, Milo, who retired 2018, and pup-in-training, Finn, have all been welcomed. I attend with them and have been able to use them to assist me in navigating safely with the blessing of those I worship with on Sunday.

I have hesitated to write about this on my blog as I in no way wish to criticize any individual or group, so have decided to go at this as a means to challenge religious and non-profit organizations to welcome and allow people with disabilities to SERVE. For you see? Accessibility is more than a functioning and accessible building. Accessibility is providing opportunities for service. Cuz y’all? We can and do serve. We can and do work. We can and do run for office, volunteer, and folks? We can and DO make a difference. Anyone who thinks or says differently is just wrong. Anyone who doesn’t provide opportunities to allow people with disabilities to serve and make a difference – should. After asking on 3 separate occasions for opportunities to teach at my church, I decided to move in a different direction and found a great place to serve. My challenge to places of worship (with members with disability), is: Don’t forget that people with disabilities are perfectly capable. They are able to and often desire to serve. Make it possible for them to do so.

After sheltering in place for 8 months, I finally “left the room”. There wasn’t a dangerous and armed enemy that I was hiding from and barricading myself into a safe place. I had just finished a very time-consuming and energy-draining endeavor (finishing my degree) and was regrouping and trying to make decisions on how best to use this time that was once spent writing and researching. I was safe and sheltered, yet requesting opportunities to leave that room and GET BUSY. I went searching and FOUND a great opportunity to make a difference in my non-work hours. (I didn’t have to look far as it was a non-profit that already knew me and knew they could use my talents and skills to promote their mission as Director of Client Services).

Just Leave the Room and Go Looking

I “meet” so many kinds of people with disability and chronic illness through “Hearing Elmo”. The condition and challenges may be different in every individual, but I have never met anyone who simply wasn’t capable of making a difference in some way, shape, fashion, or form. I have written about the prevalence of mood disorders and anxiety disorders that accompany acquired disability. It makes sense that a “new normal” does more than create physical and health-related challenges. Disability can affect us mentally and emotionally as well. I truly believe that isolation contributes to mental health disorders. For many of us, we may have to go out searching for ways to make a difference. Maybe it is blogging! Perhaps you can teach a class or coordinate a support group. You may ask for ways to get involved and be ignored and not given opportunities to suit your strengths and capabilities. Please don’t let this stop you. Keep looking and keep asking. I believe that finding even small opportunities to make a difference in the lives of others, contributes to improved mental health which can impact our overall health! (If interested in research that supports this, please email me!)

Part two of this series will be discussing sheltering in place BECAUSE WE SHOULD. I’ve been there and came out “alive” on the other side.

L. Denise Portis, Ph.D.

©2019 Personal Hearing Loss Journal

 

Chronic Pain – Part 4 (Links to Parts 1-3 below)

Early Winter trees 2018 by Deb Marcus

At my last posting, I reflected on stigma and shame regarding mental health challenges, as well as making the decision to pursue disability benefits, and how it creates unnecessary barriers to self and other-acceptance and to reaching out for the help that could potentially improve quality of life for myself and others. You can read that and the earlier postings on this thread here: Part 1     Part 2     Part 3

Having submitted to all exams required of me by Social Security for disability determination, I was awaiting word at the end of October. The first week of November I received the letter stating the denial of my initial application. Although the language they used was such that my advocate felt was the “best” possible denial, i.e. they recognize that my condition is severe but question whether it will last longer than 12 months, it was entirely heartbreaking. How could they not see that the trigeminal neuralgia, as well as major depression and PTSD are not things that will simply “poof!” go away any time soon? It was also incredibly scary but I know that the next steps are likely to drag on for months, if not years. How will I survive? Will I even want to if they can’t help me feel somewhat better? I spent several days in a struggle with myself. Then, a couple of important events occurred. A dear friend and sister in soul offered to help set up a Go Fund Me page for my basic needs, as well as for care that I might be needing in the near future for possible specialty care at the Mayo Clinic. My neurosurgeon felt that my case is so complex that he wanted me to travel for a consultation with a neurosurgeon who has had some good results with deep brain stimulation for pain. It has been nothing short of a miracle that friends and loved ones have contributed to this fund, and it continues to grow towards its goal. I have recently traveled to the Mayo clinic for the consult, which was edifying yet extremely disappointing. It has become clear that the constellation of pain symptoms I experience in the face and head are not the symptoms that they are currently focusing on as they pursue FDA approval for this technique for chronic, intractable pain. The specialist did state that it’s not off the table for me, but it’s not the first thing he would do, though the options that we may try are not terribly promising. Basically, he was compassionate but clear: I have lived with this a long time, and it is complex and not going to respond to a clear cut plan of action. As I made the long drive back to home, I may have screamed long and loud on several occasions, with the windows down of course, no need to get myself arrested on top of everything else, right?

Soon after I received my disability denial letter, I made the decision to resume counseling. I’d been avoiding it, not because I didn’t want to do the work, I was afraid of those hours and times when talking would be too challenging. I realized that it’s OK to sometimes not be able to do much work in a session, I needed (and continue to benefit from) the good match I have with the counselor I am working with at this time. Frankly, he is why I have taken suicide off the table for the moment. I simply will not do myself harm, to try to kill myself, right now. I’m “all in”. I realize that I’ve managed to hang in this long, that I owe it to myself to keep on, and simply not let that be an option for the time being. It’s not entirely off the table, it’s still available at some later date, but for now, I’m going to just take it an hour at a time—taking it a day at a time seems to large at the moment, and I realize that this is all right, too. I received an email from a longtime friend today—we’ve known each other for over 30 years, and she has a history of attempting suicide in her 30s and 40s, and is very much alive and keeping on at 61 years of age. She said she knows that others don’t get factored in when suicide is on the table, as much as others around the person who is suicidal want to think they are, but that she will be absolutely heartbroken if I kill myself. She said this in the context of a recent suicide of a dear friend of her husband’s. I’m usually not able to address this “otherness” around suicide, but she knows of what she speaks and so I will spend some time with it. But I have to say, I am scared and I am not feeling tremendously hopeful, only that I know that we haven’t run out of options yet. Meanwhile, every time I get to be there for a friend, or get to just spend time talking or walking with a friend, these are all the truest blessings.

Thank you for staying with me on this journey. Your interest, your reflections, thoughts, prayers, and good vibes are invaluable.

— Deborah Marcus, guest writer at Hearing Elmo

 

Chronic Pain – Part 3 (Links to Parts 1 & 2 below)

Part 1

Part 2

by Deborah Marcus (Blog: Visions of Song)

In the last blog post on this chronic pain thread, there was mention of the stigma that surrounds mental illness even today. Another layer of stigma, making the recovery from mental health issues, chronic pain, and multiple invisible disabilities surrounds the matter of applying for and receiving (if you’re lucky) disability benefits from Social Security.

 

As the days roll along, and I try to maintain some hope for improvement, better management of the severe and chronic facial pain that results from trigeminal neuralgia, I also take steps to pursue Social Security disability monies. For those who are unaware, SSDI monies, when awarded to an individual based on meeting medical and technical qualifications of disability, is from monies that have been paid into the fund by the individual from their past employment. https://www.ssa.gov/disability/. SSI monies are also based on disability but can be awarded to individuals who meet the (exceptionally low) income guidelines along with meeting the criteria for disability.

When I decided that I had to pursue SSDI, because I am unable to work, I felt a deep sense of shame. After all, I am not yet at retirement age in my mid-50s, yet I am unable to work and need help supporting myself. It seemed as those there were these voices surrounding me, echoing messages I’d internalized over the years about people who don’t work and get disability payments. Loser. Lazy. Certainly you can find a way to keep going, to keep working! Why are you giving up?

The fact is, I should have “given up” a good year before I did, and while I don’t really regret pushing on, I know I exhausted myself physical, mentally and even spiritually more than I needed to, all in the name of “I’m no quitter”. I had to get to the point where I felt crushed, suffocated, to say that I need to stop, that I don’t know how I’m going to survive if I don’t get approved for benefits, and even if I do, how I’ll make it work until the determination is made one way or another, but I have to stop. There was a measure of relief in completing caving in to this decision, feeling like I failed, but knowing in my heart that I couldn’t keep going like I was, getting by at work by the skin of my teeth, only because I was in positions of lesser responsibility the past two years than I had been most of my professional life, and because of that, had skills that let me “eek by” and get the basics done and fly under the professional radar. I would crawl home each day, in excruciating pain, close the door to my little apartment, get in my pajamas and thank God for the internet so that I could have some human interaction even as I had less than nothing left to give to people in my life, to myself, and would hope I recovered enough by morning, by Mondays, to continue all over again. After beating myself up for a while, it dawned on me that it wasn’t an act of weakness to reach for help, but rather an act of strength, to say that I need help, I can’t do it alone, that I’m not well and need to figure out how to get better and recharge—I’ve never really let myself say that, even as I’ve struggled so many times in life. I confess that I still think it’s a point of strength that I was determined (stubborn) about keeping on, making life work as a working person in spite of everything. I also think it’s a point of strength now, to say I need to pause, to breathe, and let others hear how I am and what I need. In the process, I’ve discovered some other things. I have learned that I have people who really love me and want to help me. Some help me by listening, some by talking things out, some by prayer and positive energy, some make sure I won’t be homeless, or without car insurance, or batteries for my cochlear implant speech processors, or food. I have already discovered a couple of people who have been in my life, good people, but who for whatever reason cannot meet me where I am right now. At first I was really hurt by this fact, but I’ve truly come to see that it’s all a process. It’s true that each person is in one’s life for a time, sometimes short, sometimes longer, and really, I have been on the other side of this equation over the years, so I see that it’s just Life.

As for the process for applying for disability, I have completed all the paperwork, medical records sent, independent medical exams requested for conditions they wanted more information on from outside evaluators. Now I await their determination. Meanwhile, I grab every good minute, every good hour, and remember to stay engaged, monitor my mental health status, take short wanders and photograph the beauty in nature. I’m working as hard at this process as I have ever worked in any professional capacity in my entire life. I figure I owe myself this much. When I start to forget, I have some loving people in my life who whip me into shape.

 

Try To See Each Other Out There

A new school year is right around the corner. I love teaching psychology courses. I love teaching. I love students. I love Anne Arundel Community College. I have a great number of “loves”, am I right?

The biggest “love” (other than the guy in the picture with me – married 32 years now) is that I am in a place where numerous opportunities await. An over all “motto” on my campus is “Engagement Matters“. I know this sounds like I’m tooting my own horn, but I was doing “engagement matters” before “Engagement Matters”. This isn’t some special talent, skill, nor ego booster. I try to see… really SEE the students in my classes. Why?

I have been invisible in my pain and loneliness before.

Having just one person notice and tell me they cared made all the difference.

It is relatively easy to see people who are versions of “self”. I want to tell you a story that for me, was the catalyst for changing how I see my students. Many of our faculty offices at Anne Arundel Community College are shared. Several years ago, I was in the adjunct faculty office sitting in one of 5 desks. I usually get to know the other Psychology faculty, but this specific office is shared by other departments. To this day, I have no idea who this teacher was. I only know she taught history. A student was meeting with her. The student was sitting in an easily recognizable “defensive” position, just oozing aloofness and apathy about what she was hearing. It seemed she had done poorly on an exam and had met with this professor to see what kinds of extra credit were available. Unfortunately, this teacher was not really seeing her. Perhaps the student felt backed into a corner? Maybe an earlier excuse she had provided (that I had not heard) was shot down. All I know for sure was that she had given up trying to get the professor to cut her a break and instead protected herself with a belligerent, bored, and apathetic attitude. My class start time was approaching so I packed up my stuff and headed outside with Milo (my service dog) to give him one more potty break before class.

When I returned to the building, this student was sitting in an alcove crying her eyes out. I “saw” her, as did Milo-bear. He led me over to where she was sitting and I sat down next to her. Milo put his head on her knees. She looked up in surprise and then continued to “release heart pressure” as she gently stroked Milo’s head. I didn’t say a word. She had seen me in the faculty office. (It’s hard to miss a professor with a service dog). She didn’t say a word.

erm… Milo didn’t say a word (but was “speaking” volumes).

About 15 minutes later, she quietly said “thank you” and gathered her things and left. I grabbed my stuff and headed to the elevator, now fairly late to class.

Sorry, sorry, SORRY” I chanted as I rushed into class out of breath. “Sorry, I’m late!

My students looked up and smiled, putting their phones up that they had been using to take advantage of my tardiness. “Drew” (name changed) piped up and said, “Bob Burg, right?“. Another student explained, “Yup. We saw you with that student having a meltdown!

I stood there a little bewildered trying to catch up with what they were saying. Another student (able to decipher the confused look on my face), added, “Yeah! Remember the meme you shared in class last time?

In my Psych of Relationships class we had just covered communication and learning to take an interest in others – even total strangers, and WHY we should do so. I had just shared in the last class, a slide with this photo/meme:

I had steered our discussion towards seeing beyond the words. Seeing someone who is hurting can quite literally mean the difference between life and death. We discussed different opportunities we have had. Opportunities to take a few minutes to make a difference and to CARE. Sometimes a topic just “takes off” in class and numerous students shared how it felt for someone to take an authentic interest in them and to really SEE them.  Through a “Poll Everywhere” activity, we took a quick class vote of who was currently going through something difficult and felt invisible and alone in their pain. Nearly 87% of the class signed in to say “this is me“.

The class looked around in astonishment. One student said, “Everyone in here looks happy!

BINGO

We have to look beyond a quick glance. Really SEE the whole person.

This time of year reminds me to make it my heart’s prayer and my default response to be the kind of person who really SEES other people. It only takes a few minutes to show someone you see them. By…

… giving a gentle hug

… asking if they are OK

… just being with them for a few moments

… simply saying, “I care”.

Try to see each other out there.

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal

“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

expected

normal

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.

Everyone.

Denise Portis

©2018 Personal Hearing Loss Journal