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

 

 

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

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

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

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

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

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

Let me start with the first one.

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

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

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

expected

normal

even beneficial.

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

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

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

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

Their child has an unhealthy addiction.

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

Their most significant, personal relationship just imploded.

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

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

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

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

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

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

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

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

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

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

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

Everyone.

Denise Portis

©2018 Personal Hearing Loss Journal

 

Shot Down as a Volunteer

One of the big motivators to “finish” while working on my Ph.D., was simply knowing I would again have time in my schedule to do some volunteer work. I suppose it makes sense that many people believe that folks with disabilities or chronic illness are unable to participate in volunteering, community service, and areas of ministry. It has been my experience (27+ years) that people with disability seem to know their limits better than people who are able-bodied. This isn’t always true, obviously, since many of us who identify this way HAVE signed up to do more than we are physically, emotionally, or mentally, able to do. I have, however, met more people who know their limits within the disability population, than those who are able-bodied and habitually over-extend themselves.

Imagine my disappointment and surprise when numerous pleas to allow me to be involved in “extra curricular life” activities, were shot down again and again! I tried very hard to put myself in the “shoes” of the decision-makers and could see perhaps how they might think I have limitations that may interfere with my ability to be “on time and available”. I know it has been nearly five years since I was really able to immerse myself into various community roles as a result of the time and energy required to finish my degree. Maybe it has been an “out of sight/out of mind” reaction?

Regardless, I spent a couple of miserable weeks trying to figure out why I continued to be ignored by the decision-makers in places where volunteer teachers, trainers, and workers were needed. I decided to nix that miserable feeling and look for “other” and perhaps “new” areas to spend some of my non-work hours.

I’m so glad I did.

I am gearing up to initiate on an-campus chapter of Active Minds at the community college where I work. I am very excited about it and believe students will benefit from having a chapter and student group on campus. It will take a good number of months to generate the student body support needed, but I am willing to work hard to see it happen. I would have never LOOKED for something new like this if I had not found other doors closed to me.

Can Do Attitude

Ms. Amado at the University of Minnesota explains that people with disabilities can and should seek to volunteer in their communities as they receive the same benefits other able-bodied volunteers receive. Social inclusion (community membership and friendship), contribution (happiness and satisfaction), developing marketable skills and job opportunities, networking, and status/reputation, are all benefits volunteers receive (Amado, 2001, p. 28). So why do people with disability often struggle to find volunteer opportunities?

Sue Bott, director with Disability Rights of the UK, believes some of the barriers to volunteering are false assumptions. “Rather than thinking about what they can offer, organizations tend to imagine some of the perceived problems having disabled volunteers will cause them” (Hudson, 2013). Rak and Spencer (2016) encourage organizations seeking volunteers to improve the representation of people with disabilities. “Educate stakeholders about the benefits of volunteering and being part of civic, and other community based groups in improving the quality of life of persons with disabilities” (Rak & Spencer, 2016, p. 1705).

This all sounds great, right? Unfortunately, there are very real barriers to people with disabilities even if they find an opportunity to be involved. Transportation can be a significant issue, as can weather-related mobility barriers. One area of need and “very accessible” opportunities, includes mentorship. The disability community has taken very real and positive steps FORWARD, as the result of mentors making a difference. The American Association of People with Disabilities explains the importance of mentors with disabilities:

  • The influence of mentors. Although the family was the most commonly cited influence on employment for the participants, professionals such as college professors, service providers, and employed individuals with disabilities, including benefits planners and community leaders, were also commonly mentioned.
  • The power of mentors with disabilities. The participants in this study were driven to be self-sufficient through the influence, motivation and modeling of other successful people who have disabilities. The mentoring relationship took many forms, from one of general exposure to people with similar disabilities, to a support group, to a close individual friendship. Regardless of the form of mentoring, the effect on the participants was cited as a major factor in their successful transition to work.
  • Support of peers. Many of the participants attributed their drive and success to the mentors they had in their lives. In some cases, peer mentoring occurred in the form of a support group of individuals with similar disabilities.

I know mentors with disabilities that spend numerous hours online, making a difference in the lives of others by being a mentor, coach, or advocate. There are numerous ways to be involved. Even “blogging” is a significant area of service and support. Many mentors with disabilities started out by simply writing about their struggles, successes, and life as a person with disability.

Has a door of opportunity been closed to you? Look around. I guarantee that other open doors are there. We simply have to find them, and walk through! Good luck!

Amado, A. (2001). Impact: University of Minnesota. Retrieved July 30, 2018, from https://ici.umn.edu/products/impact/142/over3.html

Hudson, S. (2013). The Guardian: Is it too difficult for people with disabilities to find volunteering roles? Retrieved July 27, 2018, from https://www.theguardian.com/voluntary-sector-network/2013/aug/14/disabilities-difficult-volunteering-roles

Rak, E. C. & Spencer, L. (2016). Community participation of persons with disabilities: volunteering, donations and involvement in groups and organizations. Disability Rehabilitation, 38(17). doi: 10.3109/09638288.2015.1107643

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal

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

 

 

 

Mitochondrial Disease in the News

Ruth and Gary Fox

I love having guest writers at Hearing Elmo because it helps all my readers understand and stay informed about various disabilities that, frankly? I have very little information and certainly a lack of firsthand knowledge. Ruth has written for Hearing Elmo before and I always welcome her contributions. For this post her husband, Gary, contributed as well. 


Mitochondrial Disease is in the news again, because of the battle between the parents and the English justice system over the treatment of little Charlie Gard. The form of Mitochondrial Disease that Charlie Gard has is extremely severe and very rare. It has damaged everything in his body to the extent that he requires medical life support to survive.

The core of mitochondrial disorders is energy.  Mitochondria is in every body cell (minus red blood cells) and is responsible for converting food to energy. When this does not work properly, it is call Mitochondrial Disease (or Mito for short). Mito affects everyone differently, depending on where and how the person’s mitochondria are affected.  Any body system that has defective mitochondria will malfunction and possibly progress to complete failure.

As a person with Mito, people have asked me what the effect of mitochondrial disease is.  For me, it means working with multiple medical specialist to maintain the function of weakened organs. Because the degree of energy and fatigue determines the rate at which my organs deteriorate, managing that energy level is my greatest challenge.

Some people use the spoon theory to explain life with Mito fatigue. However, my husband and I wrote another narrative that makes more sense to us. Instead of spoons, we picture a zero balance bank account.  Just about, everyone knows what it means to have a bank account and how the balance of that account affects his or her activities. They also know the pain of an overdraft charge.

A healthy person makes energy deposits into their account from food, rest and exercise and has energy left in their account at the end of the day to pass over to the next day.   People with Mito do exactly the same thing, but because their energy output is very low, their account drops to zero at the end of the day with nothing to share with the next day.

People with Mito know that all of their body’s involuntary organs like their brain, heart, lungs, ears, eyes, and digestive system need a huge portion of the limited energy they are able to put into their account.  The average healthy person is typically unaware of the energy use by their involuntary body systems.

After meeting the energy needs of their involuntary functions, using energy for self-care activities is next.   This includes things like bathing, brushing teeth, dressing, or eating.  Some people with Mito do not have enough energy in their account to do these things independently, and some can do them independently, but often need to rest to build up their energy account between tasks.

After basic self-care comes necessary health related appointments to the dentist, the primary care doctor, the endless specialists, therapy appointments, etc.   The person with Mito has to anticipate ahead of time how much extra energy these appointments will demand.  To avoid having their energy balance slip into the red, which means a Mito crash where involuntary body systems are short of energy and struggling to function, they spend days ahead resting more, and building up their account to cover that extra expenditure of energy.

Everyone gets health benefit from exercise.  People with Mito have difficulty with repetitive movement, as their energy accounts are often too low to replenish the energy used by their muscles fast enough.   Yet getting some exercise, even passive exercise provided by therapists, results in strengthening.  It takes considerable effort for people with Mito to balance their energy account with exercise.

Like every other functioning human being, a people with Mito, have the same desire to live independent lives as healthy people do.  This can mean parenting children, holding down a job, keeping up their home and yard, shopping, preparing meals, participating in religious activities, attending educational classes, enjoying leisure activities, and keeping up with friends and family.  Participation in these ordinary things are difficult, or even impossible, for people with Mito because their energy account balance is too low.

People with Mito can increase the balance in their account by careful budgeting of their energy.  They can chose to sit to perform their self-care routines, instead of standing as most people do.  They can use a mobility device to save the energy they would use to walk, to do something else.  They take advantage of seating that tilts to avoid using the extra energy that it takes to sit upright against gravity.  They can chose the timing of their activities to avoid extremes of temperatures, which will drain much energy from their account.

Finally, there are those unexpected life events that may totally empty a Mito person’s energy account:  mental and emotional stress (both positive and negative), illness and surgery.  A simple cold can be life threatening for a person with Mito, depending the amount of energy left in their account to fight it.  It can take days and even weeks for the person with Mito to replenish their energy accounts.

Though I cannot do everything, I want to do, and have struggles with my limitations; life is good, because I have learned by years of practice how to budget my energy. My husband helps too by taking on the more energy consuming activities, while I do the less energy consuming things in our household.  This way we can enjoy more of what life has to offer, together.

Ruth and Gary Fox


L. Denise Portis

© 2017 Personal Hearing Loss Journal

Half a Stick of Juicy Fruit Gum

juicy-fruit

I miss my grandmother (Vina Jewell Burhenn – Isn’t her name the GREATEST?). As I stopped to think about how to approach my subject for Hearing Elmo this week, I found myself thinking of a very special memory.

It was always a treat to sit with my grandparents in church on Sunday. I think I convinced myself that Grandma would let me get away with more, and my mom and dad were going to make me be “super good”. The pastor was my uncle, Cecil, and so even as a little kid we were expected to be an example to other little kids in the church because we were “kin”. So whenever possible, I always sat with Grandma because I could get away with more – AND… she always gave me a 1/2 stick of Juicy Fruit gum.

Naive kiddo that I was, the truth was that Grandma made me be even more “golden” and because we sat three rows from the front, my parents sitting behind – and to the right of us – could STILL see everything I did.

In the earliest years, I don’t think I ever questioned, “why a HALF stick of Juicy Fruit gum?” I will have to hazard a guess that around  8 or 9 years old, I finally whispered and asked Grandma, “why a HALF stick?”

“When you break it in half, does it let the magic pour out?” I whispered.

Response: Blank Stare

“When you break it in half, is it teaching me to share?” I queried.

Response: Blank Stare

“When you break it in half, is it to make sure I come back for the other half?” I said softly, and with strategic wisdom.

Response: “Denise, I gave you a half a stick because it is ENOUGH”.

Oh. Well gee. I know my child-brain kinda hated the logic of that.

My grandmother would dole out half sticks of Juicy Fruit gum because it was ENOUGH. (Side note: What a shame that it was never Doublemint gum as I would have discovered at an earlier age that I was allergic to spearmint).

It Simply Doesn’t Take MUCh to be ENOUGH

I’m told I take after my grandmother in a lot of ways. Here are just a few FREQUENT reminders from siblings and parents:

  1. I doctor my own ailments to my detriment. And I have Google, which Grandma did not!
  2. I love animals – many times more than people.
  3. I expect justice and fairness.
  4. I will respect you, but by golly you better reciprocate. If you don’t we’re gonna argue!
  5. I can be stubborn.
  6. I don’t mind confrontation. (Likely only recently doing confrontation in the right way).

I think one of the things I get down about the most as a person who is differently-abled with a chronic illness, is that I often worry and fret about my limitations.

I can’t hear on the phone so I am not able to easily call up a friend and ask how they are doing.

I can’t see to drive at night (headlights trigger vertigo), so I cannot go to parties, meet-ups, etc. with friends at night. Most folks do stuff later in the day.

I can’t just drop everything and go to a friend’s rescue. My own limitations require that I determine if I’m physically ABLE. I must ready my canine partner, Milo. I am not a 9-1-1 friend. That grieves me.

You may have limitations that at times, cause you to feel as if what you have to offer is not as valuable. You see how other friends reach out to each other and are discouraged that you cannot offer the same kind of friendship. (If you’ve never read “Spoons” – you should. It eloquently describes life as a differently-abled person). You can only offer a HALF stick of Juicy Fruit gum and you are a little bit pissed off by that.

Do you know what I have learned? A half a stick of Juicy Fruit is enough. I may only be able to touch base with friends via text or Facebook, but taking the time to touch base is STILL appreciated. I may not be able to go to things at night, but when my daytime schedule allows, I can drop off a meal or come by for a quick hug. I cannot be a 9-1-1 friend and be able to just physically show up at an emergency. However, my friends know they can text me or private message me and I will drop EVERYTHING to pray, encourage, and be there for them.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” 
― Ralph Waldo Emerson

We want to make a difference. We want people to see our value. We need to be needed. We all strive for that purpose in different ways.

Maybe you are passionate about social justice issues and do all you are capable of doing.

Perhaps you are a writer – and do so to encourage, educate, and advocate.

Maybe you are an artist. Your drawings, photos, paintings, and sculptures reach out and change people.

You follow up with hurting people and ask them how they are doing NOW.

Your HALF stick of Juicy Fruit is pretty darn important. What you CAN do… what you are able to do… is ENOUGH.

Don’t let anyone tell you anything differently. If they do, give them my number and I’ll take care of it. <wink>

You have value. Believe.

Denise Portis

©2017 Personal Hearing Loss Journal

 

Coming to Terms

Deborah Marcus' blog "Visions of Song"
Deborah Marcus’ blog “Visions of Song”

It is always a treat when guest writers post for “Hearing Elmo”. I never wanted this blog space to be all about “me” and my own issues. Please let me know if YOU would like to write for the site!

Deb has been a friend for so long, I would have to stop and burn calories just to remember the when and where we first connected. I love her like a sister and her presence in my life has been a blessing. Deb writes (click the photo above to visit her blog) and is a photographer as well. As a matter of fact, I re-designed my guest bath around her dragonflies. A loving “welcome back” to my friend, Deb, as she shares some things that many of us with disability, chronic illness, or special challenges deal with on a daily basis. 

Winter
Winter

From the time I was in elementary school, I understood that life is not fair, that it’s not even a question of fairness, and that readjusting one’s perspective is something that must occur for the full expression of the self, time and time again.

Of course I didn’t think of it in quite those terms when I was 6, 8, or 10 years old, but I experienced it. I imagine we all do in one way or another, whether by subtle shifts or dramatic events that leave us no choice but to consider this a reality of being human.

Here are a couple of examples. Each of us has some of our own.

-That moment at the audiology clinic, age 9 or so, where I went every couple of years for a hearing test as there is hearing loss in my family. I heard someone say, looking at the audiogram: there it is, the mild to moderate hearing loss. I didn’t know how to read the graph at that time, but my maternal grandmother was hard of hearing and I understood it from that vantage point. I would be like grandma, hard of hearing. Reading lips. I didn’t understand that I would lose the ability to hear birds singing, or the many nuanced experiences that we take for granted when we are able to hear, but I was able to internally adjust to my reality.

-A different moment, after a terrible event at home. I went out into the yard, in the dark, in winter and lay on the snow-covered grass. I looked up at the clear sky, full of stars, and as my breathing slowed to a normal rhythm, thought how beautiful it would be if I could just fall asleep right there…and never wake up. After a while, I felt something move me. You might call it God. I internalized it as a spirit of some kind. It said to me: No, it’s not your time. Stand up. Go back inside and warm up. Now I understand that as either depression, or self-preservation, or a little of both. I did not mention this to a soul until many years later.

Spring
Spring

In order to move forward after life-changing events, one has to be able to reckon with the forces within and without. I was motivated in the first example away from despair. As I looked towards my grandmother who could not hear, though it was beyond me at that age to recognize how small her world had become by that point in my life, I could see that she had her faculties and was loved by many in her circle, and so I had expectations of adjustment but did not despair. In the second example, in despair, I can’t say it was all me figuring out what to do, but had an experience that told me we can seek and find the resources to continue on.

Summer
Summer

Fast forwarding to today, I have experienced a number of life-changing events, some of which constitute frank disability. I have had orthopedic issues since middle school. I am now completely deaf without my cochlear implants. I am a survivor of mother-daughter sexual abuse, and with that came some episodes of physical and emotional abuse. I’ve experienced periodic vertigo since the occurrence of one of those physical episodes, when my mother, in a fit of rage I’ve never been able to parse out, pushed my 16 year old self backwards down a long flight of stairs. I only recall coming to at the bottom of the stairs, the crawl back up, the screaming that came from my mother’s throat that suggested that I was somehow at fault for my “accident”. I have struggled with (undiagnosed) depression for years. I’ve coped with physical pain for most of my life, with degrees of it varying over time. The most extreme of these pain issues resides in my facial nerve, with a diagnosis of trigeminal neuralgia.

Autumn... reflections
Autumn… reflections

Throughout each of my 53 years, I have found the will to continue on. Recently, I had to consider the prospect of foot surgery. Wanting to avoid it at all costs, I explored physical therapy, at the encouragement of an acupuncturist I see from time to time. My hope is still to either avoid surgery altogether or be better equipped to manage if I did. During my initial evaluation, I shared my vestibular/balance history. I had recently had the courage to tell my primary doctor about the trauma when I was 16, the vertigo, the neck pain, and now the increasing balance issues. It became clear at the first assessment that my vestibular system is in extremely poor shape. The physical therapist wrote “fell like a tree” in the assessment notes. I worked extremely hard both in therapy and on home exercises from September into December. While we made some modest gains on the foot issues, there was no progress on my balance issues. In December, my PT and I had a heart to heart. It is pretty clear that as a result of multiple factors, my vestibular system is not going to get better. I can continue to work on the vestibular exercises in effort to slow the progression, but that’s probably it. While all this was happening, my primary suggested I try a small dose of medication for the chronic depression, which I was forced to acknowledge, for the sake of self-preservation. We are working on finding a medication I can tolerate and which is a help to me.

It’s strange territory to be in this place where I feel more than a little bit at a loss. Where did my seemingly inherent sense of “carry on!” go? I’ve made adjustments all through my life, and did good works, and have had wonderful relationships and ending relationships and work and play and the same constellation of things that everyone else experiences in their own fashion. I wonder, though, who am I now? I have had moments of despair, when the thought that going to sleep and never waking up would serve me and everyone I know well. The only reason I feel strong enough to write this out in a semi-coherent fashion now is because I have begun to hear that spirit voice again, that says: No, it’s not your time. Stand up. Go back inside and warm up. To that end, I’m focusing on what my new life will look like, how to take the best care of myself possible, and how I can possibly continue to be source of support to others.

Stay warm, friends.

Deborah Marcus

Visions of Song blog: CLICK HERE