Category: invisible disability

You can do ANYTHING!  Well… MOST THINGS!

Published on by hearingelmo7 Comments

I anticipate that what I write this week will upset some folks who live with disABILITY or chronic conditions. If you would, “hear me out” until the end of the post. If you still disagree, I can easily “agree to disagree” and even concede that the power of optimism is often the key to overcoming real obstacles.

My main point? Do not tell a person with disABILITY that: YOU CAN DO ANYTHING!

This standard platform statement is normally accompanied by volume and higher pitch, with a pom-pom smacked to the face of anyone not paying attention. Educators like myself sometimes misuse this encouraging statement. Administrators may assume the statement is standard for any mandatory attendance meeting, certain to help liberate the doubtful and unify the group, lighting them on fire with enthusiasm. 

Last semester I sat and cried with a student having to drop my class. Like me, she is a TBI survivor. Her dream job was to work in a big hospital and oversee support groups for individuals and families who are experiencing life with traumatic brain injury. She wants the “shingle”, the Ph.D., the training to really make a difference. I believe she will reach her goal. She will reach her goal after a longer road than most. There will be setbacks. There will be obstacles. I shared with her that it took me 16 years and a lot of outright stubbornness to finish school. Accommodations made the attempt more equitable but honestly, I shared, “it took not giving up and recognizing my pathway to goal was a longer one”. 

I have had short-term mentors tell me YOU CAN DO ANYTHING! (My long-term mentors had a more realistic approach). However, pom-poms, enthusiasm, and genuine hopefulness will never:

… allow me to hear normally.

… walk without a limp.

… have vertigo-free days.

… help me be as sharp at the end of the day as I am at the first.

… keep me from needing more sleep than others.

… prevent me from ever falling again.

… alleviate my communication challenges.

… prevent me from feeling isolated and left out occasionally.

… stop the loss of vision in my right eye brought about by 11 concussions.

… interrupt every single panic attack.

… defeat persistent depressive disorder.

… keep me from missing my Mom, the primary REALIST in my life.

Frankly, there are some things I CANNOT do. Any successes or “wins” are the result of stubborn persistence. Any recognitions or awards are from finding a different way to accomplish the same tasks. Many “end results” were not something originally targeted. There are things I CANNOT do and tasks I will NEVER be able to do. Instead, I have learned to set my sights on something obtainable. I have learned to align my goals with things that are possible. I have even learned to dream and “pin my hopes on” goals that are doable for even one such as I. In the end, most of us aspire to make a difference. If you find yourself looking around at the place your training, hard work, and experience have landed you thinking, “Well gee. This was a major detour but gosh darn it! I’m happy and I’m making a difference!” 

Perhaps the big DIFFERENCE we make was something outside our imagination originally. Reality redirected our purpose with an unexpected detour. Yet here you are, thriving…influencing… and KILLIN’ IT! Having a sense of real purpose looks good on EVERYONE. 

I have talked with students and colleagues hesitant to ask for some extra time or an equitable accommodation because they fear being judged that their performance is only possible through props others do not need. Y’all? There is a heck of a lot of difference between equitable accommodations and “hand holding”. This photo says it all:

I received an email from a follower of Hearing Elmo around Christmas. They are on disability, with limited transportation and even more limited opportunities. They shared that at times they are discouraged because they feel limited in what they can do. But folks? The opportunities this reader has are golden, the lives they touch are valuable. They consider their purpose and mission to advocate, educate, and touch just one life at a time. They support and encourage LGBTQ+ young adults with disability and act as a sounding board, a shoulder to cry on, and are a stout champion to a truly marginalized group. 

Are you an abled administrator, director, co-worker, or friend? I encourage you to use realistic encouragement and language as you lovingly support the folks in your life who have special challenges to overcome. Having YOU helps them overcome. Be careful not to balk at a seemingly unrealistic goal. If people with disability are anything y’all, they are realists! If you are blessed with an invitation to chart a path alongside someone who is determined, then LISTEN, research, encourage, and advocate on their behalf. 

A well-meaning friend and I had our behinds parked on a bench on campus catching up with each other. Some geese flew overhead, flying in a perfect “V” and heading South for the winter. My friend said, “Wow, what a racket!”

I grinned at her and said, “Well I don’t hear anything!”

Abashed, she said, “Well at least you can see them, right?”

I said, “Sure! And I do LISTEN with my EYES sometimes!”

However, unless a big ol’ goose comes waddling up to my side and honks right in the direction of my cochlear implant, I’m not gonna hear it’s unique sound y’all. This doesn’t mean that I do not have a purpose since I cannot hear a goose honk from high above while flying in formation. My disAbilities make me uniquely qualified and effective to make a difference in the lives of those in Denise Portis’ sphere of influence. Y’all have a sphere too. Manage it. Own it. Thrive. Because all of us are pretty…

FABULOUS.

L. Denise Portis, Ph.D.

2023 Hearing Loss Journal

When Overcoming Makes You Really Tired

Published on by hearingelmo1 Comment

Photo by Alina Levkovich 

There’s nothing easy about finding your way through a world loaded with obstacles that others can’t or don’t see. When you are different, you can feel as if you’re operating with a different map, a different set of navigational challenges, than those around you. Sometimes, you feel like you have no map at all. Your differentness will often precede you into a room; people see it before they see you. Which leaves you with the task of overcoming. And overcoming is, almost by definition, draining. — Michelle Obama (Obama, 2022, p. 7).

I have said this time and again at Hearing Elmo. People with disability, challenges, and invisible or visible issues are the strongest people I know. It’s as if working hard to carry on and adapt, cope, and do your hardest to thrive, develops physical, mental, and spiritual muscles. The comparison to muscles stops there, however. Yes, our “differentness” can make us stronger, but it rarely produces true strength, muscles that are bulked up and fit. We may be strong but we are also very tired. We may often FEEL weak.

“Individuals with disabilities are at a greater risk of experiencing fatigue than the general population, and this risk increases with age” (University of Washington, 2013, para. 1). I am in my 50s now and can certainly attest to finding myself fatigued earlier in the day because of my disabilities. Even though I have a service dog to help me with gait, balance, and directed retrieves, even though I have a cane and hear with a cochlear implant, hearing and walking are physically and mentally draining. It sucks we don’t burn calories navigating life with a disability! I even make it a top priority to take naps when I can, eat healthy foods, exercise 3-4 times a week, go to bed at a decent hour and even practice mindfulness to the point it is seamlessly woven into the fabric of my life now.

Many are confused about what mindfulness really is. I think they picture someone in a yoga pose with a very zen expression. Mindfulness is actually a very active and participatory state of being. In other words, taking a long nap is not mindfulness. Unless your subconscious mind produces better results than mine does, you cannot be asleep and practice mindfulness. “To live mindfully is to live in the moment and reawaken oneself to the present, rather than dwelling on the past or anticipating the future. To be mindful is to observe and label thoughts, feelings, sensations in the body in an objective manner. Mindfulness can therefore be a tool to avoid self-criticism and judgment while identifying and managing difficult emotions” (Psychology Today, n.d.).

This “practicing mindfulness” is especially helpful after a “terrible, horrible, no good, very bad day” (Viorst, 1987). When my disabilities or rather, working, living, and loving others with my numerous disabilities KICKS MY BUTT, mindfulness helps me keep it in perspective and center myself in the present rather than focusing on my “terrible, horrible, no good, very bad day”. Something I actually tell myself after these kind of days? TODAY HAD SOME HICCOUGHS BUT TOMORROW WILL BE BETTER. I WILL TAKE CARE THAT I TAKE CARE TO AVOID BEING IN THIS SAME PLACE TOMORROW.

We can, and have, and will continue to overcome. We will also be tired, perhaps even always tired. This journey is worth it, my friend. Even if our journey includes constantly coping, adapting and persevering. It’s worth it. And by being worth it, we are a living, breathing, testimony that people with disabilities believe life is worthwhile; that WE are worthwhile.

L. Denise Portis, Ph.D.

2022 Personal Hearing Loss Journal

Obama, M. (2022). The light we carry. (1st edition). Crown Publishing.

Psychology Today (n.d.). Mindfulness. https://www.psychologytoday.com/us/basics/mindfulness

University of Washington (2013). How to do a Lot with a Little: Managing Your Energy [Factsheet]. Aging and Physical Disability Rehabilitation Research and Training Center. http://agerrtc.washington.edu/

Viorst, J. (1987). Alexander and the terrible, horrible, no good, very bad day. Simon & Schuster.

Happy Trails to You

Published on by hearingelmo5 Comments
Dale Evans and Roy Rogers

After someone you love dies, you may discover some things about the person that you didn’t know. My Mom loved to sing. Because her generation (the “Silent Generation” 1928-1945) was different than mine (“Generation X” 1965-1980), the songs she would sing at breakfast (a normal occurrence) and in the evening were oldies. Breakfast was usually “Mockingbird Hill” (When the sun in the morning, peeks over the hill…).

When Mom was diagnosed in July of 2021, my siblings and I began to hear from her former students on FaceBook. As the ALS progressed and began to take away basic functions, we would read to her what her former students were saying. It was all good and brought many smiles and happy tears. While she could still talk, she would relay some story about the student that posted and it was as if she took us by the hand and walked us back to her teaching days. Mom was defined by what she did, a teacher. It was her real joy and privilege to teach for over thirty years.

One recurring theme from former students was that she would sing the first few stanzas of “Happy Trails” as they left class at the bell. Though knowing this song was a favored one, we were still shocked to learn she sang in public too!

I have been teaching now for 28 years. I have taught middle school, high school, and college-aged students. Having heard from so many of Mom’s former students since her diagnosis and subsequent death, it got me to ponderin’ — “what would my students have to say about me?” “Would they even remember me?” (Mom had been retired for 16 years at her passing).

Yesterday was the first in-person convocation we have had at Anne Arundel Community College since 2019. A recurring theme of the various administrators was to remember that the smallest things could make a difference. Even a taped message from the incoming SGA (Student Government Association) president reminded us that the “small things matter”.

I am a big believer in the difference “small things” make. For you see? It has been small things each and every day that have encouraged me to continue hiking that trail. My trail is not always happy, but it is a scenic and worthwhile hike.

People with disAbilities often express their concern that they do not matter anymore. Or perhaps they feel that with their disability, they can no longer make a difference. Many of you already know these things about me, but let me summarize some of my own challenges:

  1. Late-deafened (25 years on)
  2. Post Concussive syndrome (TBI as a kiddo and 11 concussions since)
  3. Meniere’s disease
  4. Vestibular disorder
  5. Mental health diagnoses (Panic Disorder and PDD)
  6. 65% blind in my right eye (concussions)

If I had a dollar for every time I considered giving up, I could retire now! I’m no super hero. I’m not anything special. What I am is persistent and determined. Stubbornly resolved to connect at least one time each day with someone who needs encouraged, loved, high-5’d, heard, or acknowledged. Notice that none of these things require being an abled person! I know that many of my readers are people with disability or chronic illness. MANY have expressed to me the dismay they feel in being disabled, by NOT being able to make a difference. Their physical or mental health diagnoses have meant they have learned coping skills or learned a new way to do things. However, many still FEEL disabled because they feel as if these diagnoses take away opportunities for them to MATTER.

My friends? Please do not ever discount the difference it makes for you to be kind to the cashier at the grocery store. Smiling and saying a kind thing or two to the delivery person may completely turn their day around. Being kind and friendly to that young wait staff person can make a day that is crushing them seem not so burdensome. Send an encouraging email or message to someone you know is struggling. It can be life-changing for them. Make a phone call to someone you know who feels isolated. Take advantage of the way social media platforms “level the playing field” for those with disabilities through CONNECTING them with others. One small comment can make a difference.

I know this for a fact! I know because the

Deborah’s, Wendy’s, Kellie’s, Lisa’s, Candice’s, Sara’s, Stephanie’s, Kyersten’s, Felicia’s, Kimberly’s, and SO MANY more have taken 15 seconds to type me a message that encouraged me and rekindled my desire to keep on keepin’ on. I’m not saying it is EASY. For some, it may mean real “spoons” are used up (The Spoon Theory).

ALS is a horrible, terminal disease. My Mom suffered and died a terrible death. I’m still dealing with the fall out and likely will for the remainder of my own life. But do you know at the end, Mom could only roll her eyes, grin, and wink, but she did that as her hovering children did their best to love and care for her? She could speak some, but it was a real chore to understand, even with picture, word, and alphabet cards to assist while she could still point. Yes. There were days with tears and “why God?” conversations. Yet while DYING she continued to make a difference. These past 12 months cemented an already steadfast “heart beat” for me. NO MATTER WHAT, I can make a difference to someone. In my work as a suicide prevention and awareness advocate, one of my favorite sayings is “Your voice is your power”. Use it.

Choose to sing “Happy Trails” to someone upon departure. Choose to smile and say, “I truly hope you have a great day!” Sign to someone “happiness is a choice”. Send that email to a struggling soul, “I’m thinking of you today”. You have a purpose. It doesn’t matter how many disabilities or challenges you have. You still have the power to make a difference. This is your super power. Use it. It matters. Happy trails to you…

L. Denise Portis, Ph.D.

L. Denise Portis, Ph.D.

2

Support

Published on by hearingelmo1 Comment

I first saw this Willow tree in “all its glory” when we first moved here in 2015

I really love living in Anne Arundel County. When we first moved to our “forever home” in 2015 (worthy of this auspicious title because we finally found an affordable and accessible home), this Willow tree was huge! Located on a nearby farm that I drove by every single day, this tree shaded a large area of pasture that 10-15 cows called home. You can tell by the size of the original trunk how massive this tree was in its prime.

I do not know if my admiration and affection stemmed from the fact the tree was simply beautiful, or that it bordered this idyllic version of a small farm reminding me of my childhood. Regardless, I became really attached to this tree. I passed it on the way to work and on the way home from work. It was hard not to get distracted by which cow or calf was scratching its bovine butt or shoulder on the trunk of this tree as I drove by each day.

One day I noticed that the owners had added some wooden supports on one side. I had noticed the tree had a slight “lean” to it all along and was curious about the farmer’s attempt to provide assistance against the “lean”. After twenty minutes of “googling” Weeping Willow trees, I discovered that their shallow root system can mean a tree can be at risk in high wind areas or areas with high water tables. I was actually surprised the farmer chose to do this as the effort provided support, but certainly was not aesthetically pleasing. It was the only provisional shade in the pasture, so perhaps the owners sought to prevent a problem before it happened. In this way, the farmer insured necessary relief from the heat of the day for the small herd.

Wouldn’t ya know, last Fall “something” happened to this tree. I didn’t see it happen so could only guess as the trunk was split and the vast majority of the tree lay in pieces on the ground. It made me very sad. Don’t ask me why, but I was a little weepy about the broken Weeping Willow! Over the next week I noticed branches being cut and hauled away. I was surprised to see the core trunk of this once stately giant with graceful crown of “weeping” branches still intact. In fact, it continued to be supported.

I like to think this survivor tree held some kind of sentimental value to the farmers. Perhaps it was a more pragmatic reason such as Willows grow quickly and it provided necessary shade to protect the cattle on a day with unforgiving heat and humidity. Still, I prefer thinking it was for heartfelt reasons they chose to do what they could for this “little engine that could” tree.

I watched all winter. Each day I drove by and thought this tree is DEAD and DONE. Much to my surprise, this Spring the tree began to grow again. It looks a little awkward and perhaps even unsightly with the obvious man-made supports in place. Yet it sprouted new branches with blooms and then leaves. I have a feeling this tree is going to surprise us all.

Anne Arundel Community College, like other schools nationwide, was forced to move all instructions online this Spring. Is it because I’m late-deafened that I really prefer interacting with my students face-to-face? Maybe. I know plenty of instructors with normal hearing that were dismayed by the daunting task of providing an engaging learning environment.

Many teachers provide a little blurb in their syllabus and perhaps a “3 minute mention” about accessible options, assistance and supports, and disAbility services. I realize it is likely because my heart beats within the chest of someone who lives with disAbilities and chronic conditions, but to me the issue should not be mentioned once and then never again. For one thing, there are numerous conditions that do not classify as a disability yet students still benefit from support. There are mental health diagnosis and physical chronic conditions that may make it difficult for a student to be “all in” during classes.

This is why I talk about it… WEEKLY. I remind students to come to me if they need support. Perhaps they need a face-to-face meet in my office. After quarantine, it may mean they needed a Zoom call so that they could talk. Prior to the social isolation restrictions in place, I used the ‘RED PAPERCLIP‘ system. My students have nameplates that they toss in a folder at the end of class. If the red paper clip on the back of their name plate was moved to the top, I contacted them via email and we set up a “text meet”, office hours conference, or FaceTime call.

After Spring break turned into a 3-week long, panic-filled transition period for instructors, I thought long and hard about what to do in place of my “RED PAPERCLIP‘ system so that students could still let me know they needed my support for something. These “somethings” included things like:

  1. A 2-3 day extension on a due date
  2. A pep-talk
  3. A listening ear
  4. Further information about the details of a project if the written instructions alone were not enough
  5. Resources and/or connections to virtual mental health practitioners (I’m a teaching psychologist and not a counseling psychologist).
  6. Resources for food, shelter, etc.
  7. Advice and discussion about transfer decisions
  8. Extra credit opportunities
  9. AND MUCH MORE

So what to do if I didn’t have nameplates turned in after class and a visual check of red paperclips? Mid-semester I could only come up with staying in close contact (every couple of days) via email, reminding them of my availability and desire to assist. Do you know during the last 8 weeks of the semester, I received a half dozen texts from students who only sent a picture of a red paperclip? I received OVER a dozen emails from students with “red paperclip” in the subject line of their email. It made me smile. Well… it was a weepy smile, but a smile nonetheless.

For whatever reason, the farmer down the road from me, decided to support this willow tree. Will it ever be self-supporting again? I can’t answer that. Yet with support, this weeping willow provides something needed and necessary to a small herd of cattle. It is growing back quickly. Who knows what it will look like next year? Perhaps it provides some sentimental value to the owner as well. What I can tell you is that without the man-made supports in place, this tree wouldn’t have had a chance at a comeback.

My students know that I get “having a bad day”. I don’t allow them to abuse it but they know they can email me for some additional supports or “course grace”. I am also very transparent about my own good days, bad days, and having to push through ON a bad day. You see? I want to model good self-care. I also want to model the strength required to ask for assistance. Heck, I am “fiercely independent” using cochlear implant, captioning apps, service dog, and cane. However, I have learned there is no shame in asking for assistance. In fact, there is strength in asking for assistance and support.

Do you have people in your life right now who need support? If you don’t, you aren’t looking. We all need some support at different times in our lives. It may be a small “help”, but it can mean the world to someone at a time in their life when they just “need a little something”. I also encourage you to learn to ask for support. I assume many of you who are long-time readers of “Hearing Elmo” have disabilities or chronic conditions. Having extra challenges doesn’t mean you aren’t capable of helping others. It also means that you may need a little support from time to time. Learning to ask in a cheerful, matter-of-fact way goes a long way in positive advocacy. I have learned that many friends, colleagues and even total strangers do not know HOW I need support unless I inform them. It may sound like:

“Excuse me, could you pick up that credit card that I dropped? My service dog has trouble with that unless it is on carpet”.

“The automatic door button doesn’t seem to be working. Could you open and hold the door for me?”

“My fingers are particularly numb today. Do you mind picking up the papers at the end of each row?”

“The elevator in this building is not working today. Can you walk a few steps in front of me as I descend?” (Finn, my service dog, does all the work. However, I need a visual peripheral block to keep from feeling wobbly).

“Can you talk into my phone so my app can caption your voice? There is so much background noise in here I cannot hear you”

“Do you mind carrying my tray from the register to a table? With leash and rolling bag in hand, I cannot manage carrying that safely”.

I have never NOT had someone willing to help.

So keep an eye out for leaning willow trees. Pay attention to any “red paperclips” on the face of or in the body language of someone you meet. In small (and sometimes large) ways, we can make a difference.

L. Denise Portis, Ph.D.

©2020 Personal Hearing Loss Journal 

 

The Right to Die (Part 2)

Published on by hearingelmo1 Comment

Please review Part 1 as an introduction to this post. Thank you!

This is one of the most difficult posts I have ever written. I wanted to provide some background prior to providing both opinion and scholar resources.

I am an adjunct faculty member in the psychology department of a local community college. I teach 4 classes a semester, am a faculty advisor for 2 student clubs, am active in the Social Justice Collaborative, and provide internal professional development workshops on campus. I currently serve as the chair of our county’s Commission on Disability Issues. One of the student clubs I represent is actually an active chapter of Active Minds, a national organization whose mission is to raise awareness and work towards suicide prevention at a grassroots level by educating college-aged students. I say all of this not to “toot my own horn”, but to make it clear that to me… life is precious. I have worked and continue to work hard to do my part in preventing suicide and helping to erase the stigma associated with mental health illnesses.

Therefore, it may come as a surprise to you that I am also passionate about right to die issues. I have a very focused viewpoint on that, however, and I appreciate your seeing me through to the end of this post. I apologize for the length but I want to give you all the information I have so that you can make an informed decision about your own stance. Rest assured, if you disagree with what is provided here, you may feel free to comment at length in the comment section. I value your input and opinion.

If you follow this blog, you know that I have repeatedly shared how visible and invisible disability and chronic illness go hand-in-hand with mental health diagnoses such as mood disorders (Major Depressive Disorder and Dysthymic Disorder) and anxiety disorders (Generalized Anxiety Disorder, Panic Disorder, OCD, PTSD, etc.). You can view some of these posts at the following links:

Try to See Each Other Out There

We Are Not Given a Good Life or a Bad Life

A Prisoner of Stigma

Sometimes it Takes Work to Stay Positive

If you watched the HBO video link in Part 1 of this series, you know that one of the stories followed the choice to “die by choice but with dignity” of a lady with a lifetime history of mental health illness. As a person who acquired disabilities later in life, I have been open and honest about my own struggles with panic attacks and depression. There were times in my life where suicidal ideation was an everyday challenge. I have been on medications for nearly a decade and have seen a counselor on and off most of my adult life. It is not my belief that people with mental health diagnosis be allowed to die by choice. With a “whole person” treatment plan to address hopelessness and depression, an individual may  recover from mental health illness, or at least manage the symptoms to provide a happy and successful life. Perhaps they aren’t “cured” but their Dx can be managed . I am not in favor of providing end-of-life measures to these individuals.

I am so glad someone was there for me to dissuade me from a poor choice at a low point in my life. Life is precious to me. My life is precious to me, because I recognize the unique opportunity I have as a psychologist and person with disability, to help others discover their own value. Suicide prevention and erasing the stigma associated with mental health illness are important issues to me. It is the beat of my heart.

Having said all of that, because of my work in the disability community I have discovered a subset of this population that deals with a different set of challenges. These are people who live with chronic and debilitating pain, with no cure and no medication that completely alleviates their suffering.

When I get a headache, I take a pain reliever and my PAIN IS RELIEVED.

My mom had hip replacement surgery in August and December of 2019. The worse pain she experienced was treated with prescription opioids and later ibuprofen and HER PAIN WAS RELIEVED.

My 3rd service dog was neutered this week. He was given a post-surgery pain reliever and it appears HIS PAIN IS RELIEVED.

My point is that many people deal with chronic pain. Many of those individuals take pain relievers to alleviate or manage their pain. Some take medications that can be addictive and must weigh the variables of potential addiction to remain pain free. Some people resort to a still somewhat controversial choice of medical marijuana (although why anyone would be judgmental of that is beyond me).

Let us think about a subset of chronic pain sufferers. There are people who live with chronic, excruciating pain who have no options for real pain management. These folks have tried it all. Legal and illegal pain management options have been exhausted. Because of the nature of their disease and diagnosis, they still live with terrible and debilitating pain.

There are numerous studies that tell us that these individuals are at high risk for suicide. Some studies suggest that in the U.S., 1 out of every 10 successful suicides are an individual who lived with chronic pain (Petrosky et al., 2018). It is tough to study suicide in chronic pain sufferers, as they often have comorbid mental health diagnoses as well. (This topic has been covered by Hearing Elmo extensively… see links above). Sometimes the drugs used to treat chronic pain have side effects of depression and mood swings. In a comprehensive study, Racine (2018) found that chronic pain IS a risk factor for suicide; however, although mental health issues can be treated, pain may not be managed well at all.  Sullivan (2019) a researcher in pain management and suicidal ideation, suggests that those with pain not managed by medication, corrective surgery, or holistic therapies also struggle with sleep disturbances as they may find it difficult to relax to the point of being able to sleep. Pain + depression/anxiety + sleep deprivation = a high risk for suicide. Doctors are not only tasked with helping patients discover “what is causing my pain?” but also the request to “please fix my pain” (Sullivan, 2019). What is a doctor and patient to do with the latter cannot be addressed?

This next paragraph or so I may lose you if you haven’t watched HBO’s “Right to Die Debate” episode. Again, I request that you view this video above at the first link. I think very few people argue within the “Right to Die” battlegrounds against those who are living in pain and have a terminal disease. Some of these individual’s stories were highlighted in the video segment. Less understood (and I argue that we are less likely to support someone) is the argument of individuals who are not terminal yet living with chronic pain.

I have heard the arguments of many who continually refer back to the fact that LIFE IS PRECIOUS. Many of us have bounced back from very low points and now enjoy life and participate in our communities. I have no answers for those who ask “how can we support anyone’s efforts to deliberately end life if we view life as valuable?”

I have a friend who is like a sister to me that is currently awaiting SSDI appeal and lives with debilitating pain. I have talked with her when stabbing pain robbed her of the ability to speak or sit up straight. This is only evidence of the acute pain that hits her without warning. She lives with chronic pain always and I only notice because the overall fatigue and helplessness is a constant shadow in her eyes. She has seen numerous specialists.  Not just in her county and state, but seeking help from specialists in renowned hospitals across our country. She has a pain disorder that has been dubbed “The Suicide Disorder” because of the large number of people who have unsuccessfully tried to manage their pain and simply chose an end to a battle they could not win.

Do I value my friends life? Of course I do. Does she value her own life? I have never met anyone who appreciates and values life as much as she does. It is evident in her own struggles and perseverance as well as her art (she is a photographer). She has struggled with the desire to end her pain in a dignified and supported way. She hasn’t stopped fighting. To date, she continues to fight at great sacrifice.

My goal in writing this 2-part series on this heavy issue is simply to motivate you to put yourself in someone else’s shoes. I am not advocating easy access to life-ending means for MOST people. I do believe we are naive to believe that all pain can be managed successfully. I think we are ill-informed if we believe people can live this way long term. I do not pretend to have the answers. What I do know is that we should be discussing these issues and allowing individuals living with chronic pain to facilitate these discussions. Respect them, love them, and honor their choices. Can we value life and do any less?

L. Denise Portis, Ph.D.

©2020 Personal Hearing Loss Journal

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Petrosky, E., Harpaz, R., Fowler, K.A., Bohm, M., Helmick,C., Keming Yuan, M.S., and Betz, C. J. (2018). Chronic pain among suicide decedents, 2003 to 2014: Findings from the National Violent Death Reporting System. Annals of Internal Medicine. 2018(169) 448-455. doi: 10.7326/M18-0830

Racine, M. (2018). Chronic pain and suicide risk: A comprehensive review. Progress in Neuro-Psychopharmacology and Biological Psychiatry. 87B(20) 269-280.

Sullivan, M. (2019). What do we owe patients with chronic pain? Pain Medicine 20(5) 878-881.

The Right to Die (Part 1)

Published on by hearingelmo2 Comments

I want to handle a sensitive topic and do so with some open and honest dialogue. Before I do that, I highly recommend watching the following video (captioned). Yes… yes, I know! It is nearly 30 minutes long but that is why I am splitting this topic into two posts. The first, a video that I believe does a terrific job of pointing out all of the arguments. Next week I will write about this and provide my 2 ¢ as well as provided peer-reviewed research on this important issue.

For now, please watch and take notes. Please feel free to comment as I never fail to learn from you as well.

 

L. Denise Portis, Ph.D.

©2020 Personal Hearing Loss Journal

Sorry? Wait a minute! No I’m NOT!

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Words matter. As I have aged (and hopefully matured) the discovery of what we say and how we say it has evolved as I have learned to communicate with focused intent.

As a person with hearing loss, a typical response for me after you first say something ranges from:

Sorry? (or I’m sorry)

Pardon?

HUH?

My mama raised me to be polite I suppose. However, I have lived with acquired disability nearly twice as long as I did with “normal” hearing and “normal” balance. Even people with a normal range of hearing for their age may respond with an “I’m sorry? What was that?” if they miss something in an overly noisy room. Because I am more likely to miss what was said or miss the context and fully understand what was said, I am more likely to use these phrases.

After some length of time living with these ingrained habitual responses, I realized how it was actually making me FEEL. I’m all about good manners. I noticed that I was having to say, “I’m sorry?” so much that I was a really, REALLY sorry individual. I also realized that I had nothing to apologize for when I said it. More importantly, it served no purpose. Heck, I give workshops on how to convey to someone you didn’t hear what they were saying.

It is best to educate and advocate. Don’t complain or apologize. I am best served by responding in one of the following ways:

“I did not hear most of that because of the background noise in here. Would you repeat that please?” (Maybe even suggest a quieter location)

“I heard you say, “ya-da yada”, but missed the last part”. (Obviously we can fill in the yada with what you actually heard).

Beware of your volume. Be careful not to “guess”. After all, you are trying to educate folks that pieces of their sentence was lost but not EVERYTHING they said was.

My husband once said to me in a crowded room, “I will see you later. Plan on dinner at six?”

I heard, “… see… later. Dinner and sex?”

YES PLEASE.

When you become more proactive about what you heard and did not hear, you can also suggest synonyms. When my kids were in elementary school, they would joke that they knew more synonyms than anyone else. Having been to all of those hearing loss conferences (thanks HLAA) they learned that if your loved one was having trouble understanding all you said, throw out some different key words. It may end up being a consonant blend they have no trouble hearing at all!

“Grandma called this morning and asked you to call back when you can”.

“What?”

“I spoke to Grandma this morning. Be sure to call her back tonight!”

I hope you do not misunderstand the purpose of this post. There is nothing wrong with being polite. There is everything right about letting someone know you did not hear them.

– – – – – – – – –

Let me quickly chase a rabbit here and insert that faking that you can hear is much different than faking you are listening. The latter may result in hurt feelings or a punch in the arm. To fake that you heard someone has heftier consequences. 

– – – – – – – – – –

What matters is letting them know you did not hear them in the right way. Our age-old habits of apologizing do not fix the problem. You are more likely to encounter people who are tired of repeating something, or start to do so LOUDLY. This only distorts the words making it even harder to understand.

By suggesting a quieter place to go, explaining you may do better with a different choice of words that can be understood in context better, or repeating the part you DID hear so that they don’t have to repeat everything can go a long way to better communication.

Depending on the environment, some other great options to take the place of constantly apologizing are:

  1. If in the car, suggest turning the radio and/or music off so that your ears do not have to compete with their voice.
  2. Ask to step into a building so the acoustics assist you in catching more of what they said to you. Outside, voices can D   r…      i  f…    t…   a way…
  3. If you know them well enough, ask them to ditch the gum 🙂
  4. Make sure by word and deed that the problem is not something you should apologize for as no one did anything wrong. They didn’t either – so work on making sure they do not think you are criticizing them.
  5. Do not let others say, I will tell you later. They won’t. If you hear this, let them know you will be following up by email to discover what they said because it is important to you.
  6. If you see a conversation going sideways and frustration is evident on the face on the person you are speaking to, ask for an email. Explain you simply cannot hear them in this environment and that you ask they follow-up with a text or an email. Assure them you want to respond as needed.

L. Denise Portis, Ph.D.

©2020 Personal Hearing Loss Journal

“H A L P”

Published on by hearingelmo4 Comments

I’ve…

got this…

Halp! HALP Geegay!

Say what?

My granddaughter Samantha Jean just turned two-years-old. Samantha is at the stage where she has opinions and expresses those opinions. These opinions vary from what she wants to wear today, to what she wants to eat, to what she wants to DO, and what she wants you to do. She is just full of opinions. She also is very independent already.

“I do it!” After caring for her a couple of weeks while mama was in the hospital having her baby brother (rather early), this phrase quickly made its way to “Samantha’s Favorite Words” list.

I had to learn to let her do it, even if I wasn’t happy with the results when she was finished. Thankfully, since she is only 2, I was able to distract her to “fix it” or wait until she moved on to another activity and straighten, organize, or re-do the activity to my satisfaction.

(Yeah. I’m a little OCD and a bit of a control freak!)

What I love about Samantha, is that unlike many two-year-olds, if she was NOT able to do something she rarely had a meltdown about it. I was amazed at the first time she asked me for “halp”, and graciously stepped aside to let me do it.

I heard these requests for “halp” for numerous things:

When trying to stick her head through an arm hole instead of the one designated for her – ahem – HEAD,

When trying to get blueberries to stay on her spoon,

When trying to safely navigate the steps on the back porch which were a bit too much for such short legs,

When her train rolled to where she couldn’t reach it underneath the buffet,

When trying to read a book,

When trying to get up on some of the furniture, (see photos)

Sometimes Samantha would ingeniously choose a way to do something differently so that she could stay independent in the activity. For example, if there was something for her nearby she could use as a means of boosting herself up on tall furniture, she might drag that toy or bench close to use it to navigate her destination without “halp”.

She cannot manage “Grandma” yet so she calls me “Geegay”. I figure she will get there so I think the latter is awfully darn CUTE. I loved hearing Samantha say, “HALP, Geegay!” throughout the day. She more often did things without assistance, but never hesitated to ask for help should she:

  1. Figure out she really did need it to accomplish what she wanted to do.
  2. Was too tired to find an accessible means to accomplish it on her own, or the effort wasn’t worth the “gain”.

I had to admit while living with her, I saw the lesson to be learned again and again.

Stubborn People with disABILITY

I realized the other day that I have lived with disABILITY longer than I have lived without. The feeling was strange since I had simply shouldered new challenges and practiced “keep on keepin’ on” while aging. People with disABILITY (congenital or acquired) often find that as they age, accommodations that were once enough to give them access to an activity or opportunity, no longer are enough. Perhaps even accessibility tools, electronics, devices, etc., may have once allowed you to be independent in a task but as you age you find those things are not enough to be completely independent.

My life with a disABILITY started at the age of 6 with a traumatic brain injury, broken bones, and destroyed hearing in the left ear. After a long recovery, I never felt like a person with a disABILITY until about the age of 18 when my hearing loss became bilaterally progressive. I eventually acquired Meniere’s disease (a vestibular disorder) and really began identifying as a person with a disABILITY at the age of 26 or 27.

I have a good friend who describes herself as “bilaterally hearing-impaired”. Because we are both currently training our third service dog and work at the same place, we often train together. One thing I love about hanging out with Jessica is that she always asks if she can do something for me. Whether it is to get the door for me, pick up something I’ve dropped, carry something for me, etc., she always asks first. She doesn’t assume I want her help, she thinks to ask first in the event her assumption I need it is unwanted or not needed.

Sometimes I say, “actually Finn has been working on door buttons, let us see if he will get this door open for us”. Perhaps the item I dropped is something my Golden puppy can safely work on his retrieve and get for me, so I will let her know that Finn and I have “got it handled” and no “halp” is needed. After training together for some time, Jessica once replied to my “no thanks we’ve got this” with a very thoughtful reminder.

“No problem. However, we know each other well enough now that I trust you to let me know when you need help and that you will ask for that help”.

The first time she interjected this reminder, I found myself thinking about it the rest of the day. Can you guess why? It is simple really. People with disABILITY can be pretty stubborn, and never ask for “halp” when they really need it. We can even earn the reputation of being ornery about our refusal; ungracious in both word and attitude.

In my early adult years of learning to live with deafness and balance issues, I adopted a rather unattractive and even dangerous attitude of “I am woman. Hear me roar!” This could be interpreted as, “I don’t need help. Leave me be. I’ve got this. Don’t you dare pity me!”

The only reason I can think of that I acted with such vehement, even arrogant refusal is that I didn’t want people to pity me. I also did not want them to think that I was UNable rather than differently-abled. I think that all changed for me when I realized how it made ME FEEL when I asked to assist someone who needed my “halp” and they refused. After realizing I felt “robbed” and even hurt when denied the opportunity to help someone that I cared about who obviously needed my “halp”, I started re-thinking my own stubborn refusals.

I have lived with the assistance of 3 service dogs now. Even so, there are things my canine partner cannot do for me, or cannot do SAFELY on my behalf. I have learned to ask for “halp”.

I have never, EVER been turned down. Even should I ask the most cantankerous-looking  curmudgeon in the aisle at the grocery store to get the 32-ounce can of turnip greens on the bottom shelf because a) I can’t bend down and get it, and b) the circumference is to large for my Golden’s mouth, I have never been told NO when asking for “halp”. (Hey we love our turnip greens in this house! I lived in the South a loooooong time).

Solutions to World Problems

Surely a solution to the world’s problems is to simply be kind to others. We all know that isn’t going to be the norm, however. Still, individually we can do our part and hope (even pray) for a ripple effect.

In every way that YOU can, make a difference.

If someone needs it, “HALP” them. Do it with a smile and without conditions. Do so easily, readily, and without any need for acknowledgement. Be the kind of person who so naturally sees a need and meets that need that it becomes who you are and not what you do.

But…

It is always good to ask. Never assume that someone who appears to need help, wants your help. Maybe they have some assistive device that will allow them to pick up that item without “halp”. They want to be independent.

BUT…

Don’t be a stubborn jackass. If you need “halp”, ASK. If someone asks if they can “halp” and you simply need a few minutes to do it yourself, explain that graciously. Don’t become haughty and retaliate with angry words and threats about where you are gonna hit them with your cane. Don’t tell them what to do with their request to “halp”. (Ahem)

Necessary Reminder

May I share something with you that you already know?

Even able-bodied people need “halp” sometimes. Whether it is assistance with a task, or a needed hug at a low moment, all of us need each other. The next time you need assistance for “halp”, just ASK already!

Even my two-year-old granddaughter will ask for my help when she knows she needs it. She even does so when she recognizes that she can do the task, but that it will get done quicker and with less effort if she simply asked for HALP.

Pogosyan (2018) provides multiple reasons why we should be willing to help and accept help from others. “Research has found many examples of how doing good, in ways big or small, not only feels good, but also does us good” (para. 2). So in closing, I would like to remind you (and yes myself as well) that disallowing someone to assist actually robs them of the benefit gained from that help.

Pogosyan goes on to explain that, “One reason behind the positive feelings associated with helping others is that being pro-social reinforces our sense of relatedness to others, thus helping us meet our most basic psychological needs” (Pogosyan, 2018, para. 1). In a very powerful way, it supports our need for EACH OTHER.

I’m starting to think this world is just a place for us to learn that we need each other more than we want to admit. – Richelle E. Goodrich
Our greatness has always come from people who expect nothing and take nothing for granted – folks who work hard for what they have, then reach back and help others after them. – Michelle Obama

L. Denise Portis, Ph.D.

©2019 Personal Hearing Loss Journal

Pogosyan, M. (2018). In helping others, you help yourself. Psychology Today. Retrieved December 7, 2019, from https://www.psychologytoday.com/us/blog/between-cultures/201805/in-helping-others-you-help-yourself

 

 

Careless Words

Published on by hearingelmo2 Comments

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

 

 

Chronic Pain (Part Two – Link to Part One Below)

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Photo by Deb Marcus
July 3, 2018
All Rights Reserved

Hearing Elmo welcomes back Deborah Marcus, frequent guest writer at Hearing Elmo with “Part 2” of Chronic Pain. If you missed the first part of this topic, please click the link provided below.

——————————————————————

It has been about 6 weeks since I posted the first piece on my experience with chronic pain. Chronic Pain – Part 1       A lot has happened in that short period of time, a direct result of this sharing. I’d like to spend a little time today looking at one critical component, that of my report of having gone into a really dark place, wondering if I am truly “done”, and needing to reach out for support to deal with thoughts of planning my suicide. Soon after the piece was posted at Hearing Elmo, I spoke by telephone with a long-time friend. I’ll call her KS. She, too, lives with chronic pain, and through much trial and error, figured out the plans of action that allow her to live as full a life as her physical limitations allow. She is one of the few who I have been comfortable talking about my pain over time, at least in part because I know that she will understand on a level deeper than many who don’t live with chronic pain are able to do. I was also there for her for a number of years as she was working through her own “how do I live my best life” process. So, it should not have shocked me the fury with which she expressed finding out that I had reached such a deeply dark place and did not reach out to her. “I’m not angry with you!” she screamed into the phone. I’m not exaggerating, she was really upset with me. I understood why, and I hate hurting anyone, least of all a dear friend, but I found myself feeling forced to defend my decision not to reach out to her at a critical time. In fact, I reached a point at which I had to tell her to step back, because I was feeling shaky and scared by her reaction to how bad things had gotten for me. I’ve no doubt that it was precisely this that made me choose not to reach out to her at a critical juncture. She was able to honor my need to bring down the intensity, and had some extremely useful things to say regarding my inability to look after myself, to honor the fact that I deserve just as much care and support as the many that I have provided the same for over the years in my human services work. In fact, she and I met through our shared work, and we served many of the same clients in the community. It was a time that I was much more at my peak performance, and it’s true, I went to the ends of the earth to advocate for and support these individuals. Suddenly she shouted at me again, but this time she said: you’re still behaving like you have to hide your illness from your mother! Stunned, it took me a moment to realize what she was saying: she remembered a long ago conversation, of how I spoke of the fear in which I once lived, of having to ever tell my mother, my abuser, that I was ill and unable to act as her proxy, the public “family face”. On the occasions that this happened, I would end up with my head knocked against the porcelain bathtub, or screamed at until I wore her spittle. The episode of being pushed backwards down a flight of stairs may have triggered the facial nerve pain that has been an increasingly problematic issue in my life, but I carry with me the struggle to act in accordance with the words which I speak, that I believe I have the same rights as anyone else to good self-care. No doubt this has contributed in part to my struggles with depression throughout my life, the depression which I called everything else but that until a couple of years ago.

Photo by Deb Marcus
April 21, 2018
All Rights Reserved

Our culture still has a long way to go to acknowledge mental health as just as integral to a strong, stable society as physical health. There is some movement, but there are deeply ingrained stigmatizing messages against those who struggle with depression, anxiety, and other behavioral health conditions. Almost daily, I see posts on social media that casually “joke” at the expense of those with mental illness. Jokes about how doctors decide who is crazy and needs institutionalization, memes reflecting how someone’s Facebook posts let others know that the person has stopped taking their medication. All we have to do is substitute mental health issues with physical and we can readily see how stigmatizing these messages are, and how easy we find it to make fun of those with mental illness. There are many resources dedicated to addressing stigma. The National Alliance on Mental Illness is a great one. This is a link to some suggestions on how those of us with mental illness can work towards dismantling stigma: NAMI-Stigma

What to do with this complex blend of body memory, the physiological damage alongside the profound shift in my psyche due to messages deeply internalized? It’s interesting, because I have had several rounds of counseling over the decades. I have not been oblivious to what was done and in many ways, how I have been affected by my experiences. I’ve done hard work, processing what happened, growing stronger and more confident with every therapeutic intervention. Truly, I have, and yet I still carry significant markers that create unnecessary roadblocks towards health and healing.

Photo by Deb Marcus
February 24, 2018
All Rights Reserved

After KS and I finished our talk, I promised myself not to shut down, but to really think about what she had said. Here is one of a number of elements critical to managing life with chronic, severe pain: having someone who will call you on your shit, but because they love you, not because they want to cut you down. If you can’t be that person for yourself, my experience tells me that it has to come from others. I couldn’t deny the truth of what she said, that without being conscious of it, I have been terrified of admitting—to myself, to others who count on me to be the strong one—that I am in trouble. There had to be this intersection of things getting this bad with a friend stepping forward to call me out, in order to recognize what was happening. In the lingo of 12 step recovery programs, I have a very low bottom. I hit it, and thank the heavens I bounced and didn’t not shatter and scatter to the wind. Having reached a point where something has to give, I committed to certain actions. I had to make a plan, which has been hard to do lately. I found resources that offered tips to guide my thinking and action. Here is one: http://www.mentalhealthamerica.net/taking-good-care-yourself. I have found a counselor to meet with for a few sessions, and if this is not the right one, I will continue to explore. I will pursue disability benefits. This is an arduous, challenging process with a most uncertain outcome. I’ve known in my heart that I have barely performed at work anymore, and my world has shrunk by such measures, the walls touching my sides, that I can barely breathe. If I can obtain that support, I may have the residual energy to figure out where to go from here, what other options may be available to try to better manage my conditions, to have a better quality of life. Deep inside, I still have a lot to give, but I know I can’t be of any use to anyone, least of all myself, in my current state.

If any of this resonates with you, or if you have found strategies that have worked, I welcome hearing from you.

Deb Marcus – Guest Writer at Hearing Elmo