Support

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)

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 melife 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)

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

“H A L P”

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

 

 

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

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

Overcoming It

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

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

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

Not the consequence of providing necessary water to growing plants.

Not the consequence of washing the world clean.

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

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

although I have post concussive syndrome from numerous falls,

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

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

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

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

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

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

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

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

happy

untroubled

delighted

pleased 

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

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

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

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

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

And friend? So do you.

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

L. Denise Portis, Ph.D.

© 2018 Personal Hearing Loss Journal

The Selfless Practice of Self-Care

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

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

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

My Re-Make of an Old Illustration

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

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

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

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

… that doesn’t fit.

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

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

Ya gotta NOURISH to FLOURISH

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

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

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

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

Not if you handle turning down requests the right way.

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

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

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

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

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

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

Don’t apologize for practicing self-care.

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

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

and instead say,

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

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

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

L. Denise Portis, Ph.D.

© 2018 Personal Hearing Loss Journal

Chronic Pain – Part ONE

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

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

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

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

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

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

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

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

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

Deborah Marcus

https://visionsofsong.com

 

New Twist on an Old Fable

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

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

Moral: Necessity is the mother of invention.


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

“Where there’s a will… there’s a way”

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

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

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

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

Need me to get the door?” I asked.

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

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

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

Please Keep in Mind

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

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

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

Don’t feel sorry for us.

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

Where There’s a Will, There’s a Way

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

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

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

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

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

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

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

© Personal Hearing Loss Journal

Denise Portis, Ph.D.

My Name is Milo and I Was Afraid of Fidgets

 

My name is Milo and I’m afraid of Fidgets

I can’t tell you how much fun it is to be on service dog partner #2. Milo (and Chloe), both trained at Fidos For Freedom, Inc. and could not be more different. Milo(bear) is timid by nature. When he is on task, however, he is very focused (and less distracted by wanting to love on EVERYONE like sweet Chloe was). However, his timidity makes introducing new things a bit of a trial.

You may be familiar with a new and popular “thang” called the “Fidget”. They are actually great classroom tools for people with ADHD. I’m all about classroom accessibility, so if things like this can help students concentrate? Well, please come with your Fidget.

Unfortunately it is “new to Milo”. Milo began seeing a lot of Fidgets in the classroom. They spin – and to my knowledge don’t make a noise – but who knows if a dog can hear even this quiet “whirrrrr”? The only problem was that Milo was terrified of them. He’d stop mid-task if he saw a Fidget in use and walk around behind me to peek around my hip.

NOT VERY HELPFUL.

I knew I was going to have to do something to get him use to these spinners. He couldn’t continue hiding under the nearest desk. Since I need him to pick up the items I constantly drop, I needed him to be able to focus in spite of Fidgets around him during class.

Desensitization

After talking to a couple of trainers at Fidos For Freedom, Inc., we decided the way to go was to desensitize Milo to the Fidgets.

… so I bought one.

I opened it up, put the center button between index finger and thumb, and “gave it a whirl” with a flick of my right hand.

Not the WISEST thing to do since Milo(bear) was sitting right next to me. He made a strange sound in the back of his throat and took off. I interpreted it as “Et tu, Brute?” (my Literature teacher-mother would be so proud).

I found Milo in the walk-in closet.

Long story short, I worked with him for 4 days in short intervals of exposure. Here is where he is now…

Hopefully, when classes start on 8/28, Milo(bear) will be completely comfortable with Fidgets. This whole “desensitization” process was good for both of us. My daughter and hubby are expecting my first grand baby in October. Milo has never been around babies. He was raised in Cumberland prison and his puppy raiser before that, nor his one-on-one trainer after… had babies around. I suspect he will have to learn to become accustomed to more things very soon. ‘Cept I won’t be spinning the baby girl around and chasing Milo(bear) to expose him. <AHEM>

Facing Our Fears – and Perhaps Desensitizing Ourselves to Them

One of the biggest pluses of having a service dog partner is the courage the partnership provides. Learning to cue off things Milo(bear) hears, that I don’t, is great! I feel safer. I can count on him to hear things before I do. I can look in the direction the “sound maker” is coming from so that I can stay safely out of the way (cars, large groups of students, shopping carts with rowdy kiddos, etc).

Because of peripheral neuropathy, I drop things all day. I’m not talkin’ about that I drop 2 or 3 things a day. I drop 2 or 3 DOZEN things a day. In the past, I would have to ask for assistance to reach it and/or pick it up. Otherwise I would risk falling because of vestibular issues. This meant I often didn’t go out and do things on my own because it was too hard to ask people for help. Milo(bear) has helped me face some of those fears because he is there to help me. His favorite task is “fetch-hold-give”. In my thinking, this isn’t true desensitization though. Milo(bear) has become an assistive tool to mitigate those challenges. It’s a way around them instead of “through” them.

As I sat and pondered whether or not I have ever truly desensitized myself to something, I realized that most learning through desensitization has come from how I chose to respond to comments, people, or situations.

At the age of 51, I have now lived more of life as a differently-abled person than as an able-bodied one. I can tell you that how I respond to challenges, hurtful comments, or discrimination is much different than how I responded as a 25-year-old. Some of this improvement evolved from exposure. Other measurable steps of improvement simply came from educating myself and learning all I could about positive advocacy. It’s not that the things people say cannot and DO not still hurt me occasionally. My RESPONSE is what has changed. A 25-year-old Denise would:

  • Cry
  • Isolate myself for days afterwards
  • Embrace depression instead of heading it off with coping techniques
  • Open my mouth and “let it rip”
  • Retaliate
  • Throw a private and public pity party (that no one ever RSVP’d to)
  • Plot revenge
  • Determine to HATE that person to the end of my days
  • Google how to put a “hit” out on someone
  • Preach at them and try to make them feel guilty with a long, drawn-out “altar call”
  • … and more equally ineffective responses.

Even through constant exposure, the 51-year-old Denise does NOT always respond in a healthy and proactive way. I still have “knee-jerk” responses occasionally, especially if it takes me by surprise. However, my new response is at the very least, more helpful to both myself and the twit that said something unkind. Now I tend to:

  • Consider the source and determine how best to respond
  • Take some time to determine HOW I want to respond
  • Determine if I SHOULD respond
  • Choose a good time and place to respond
  • Cry if needed…
  • Chant to myself “you can catch more flies with honey than vinegar” (and then ask myself if I even WANT this particular fly…)
  • Occasionally seek advice from a peer support network if it is something “major”
  • Follow through on a course of action and DON’T HOLD A GRUDGE

I have learned to do this through trial and error, but also through desensitizing myself to these situations by simply experiencing them and learning what keeps me sane and healthy in how I respond.

Let’s face it.

If you live with disability or chronic illness, you are going to constantly be faced with people who don’t understand, don’t care, or say/do inappropriate things. The 25-year-old Denise response did not improve my situation, nor did it bring peace (my zen was woefully rattled).

I do not FEAR the things people say to me or the situations I may find myself in as I live life. I know “stuff is gonna happen” and when it does, my response is MORE important than how I feel as a result of the experience.

We cannot control the things people say, nor can we completely keep our life experience with disability, “hassle-free”. I do believe we can learn to live in harmony with all the Fidgets in our lives. Being a positive advocate comes from doing things wrong sometimes and learning from it. It also comes from the discovery of having handled something well, and seeing the positive change and result from our proper response.

Denise Portis

©2017 Personal Hearing Loss Journal