One-Eyed, One Horn, Flying Purple People Eater

one-eyed-one-horn

Sheb Wooley released a song in 1958 called the “One-Eyed, One Horn, Flying Purple People Eater“. I know this not because I was there (ahem), but heard the song throughout my childhood. If you have never heard this “gem”, you are MISSING OUT. To help fill that void for you, click here for a captioned version: Enjoy

Now I mention this because this song has been going through my head for a solid week. I know! I do have better things to do! However, I’m in the car enough that I tend to fill the time with singing… or maybe BELTING out the OLDIES is a more truthful admission. For some reason, this song is just stuck in my noggin’. It is a song that frankly? It doesn’t make much sense. Maybe it did to Mr. Wooley. Something doesn’t have to make sense to get stuck in our head though. It doesn’t even have to be the truth. It doesn’t even have to be healthy.

Negative Broken Record

Sometimes unhealthy thoughts and labels stick with us because at some important developmental milestone, we heard these negative things enough we have come to believe them. These negative thoughts can turn into self-fulfilling prophecies. These negative, perpetually repeating thoughts can bring us down and keep us in a state of defeat. Experience tells me that a state of defeat = dissatisfied and unfulfilled life.

A get so aggravated when people (and sometimes counselors) say you should erect boundaries with people who tell you negative things that you take to heart. Easier said than done. What if they are family? What if it is someone you work with daily? Most of the time, if someone tells me something negative I try to:

  1. Determine if there is any merit in what they are saying. If so, does it mean I need to change some behaviors?
  2. Determine if I respect the source. Should I spend any time at all contemplating what they’ve said as constructive criticism, or is something I should immediately release as misdirected and poisonous barbs?
  3. Determine the level of influence. Do I work with this person? Is this someone I must see either occasionally or frequently?

Sometimes the “stuck in my playback feature” of my brain are negative comments, labels, or criticisms from people I care about. I can set up a boundary (and have… mentioned below), but I cannot just shut the door and throw away the key (although there is a time for that too… read on!).

I’m no expert in rebuttal of mean insults, however I learned at a fairly young age that “fighting fire with fire” only burned everyone. Frankly, I can stand the smell of scorched material.

I learned that getting defensive often only made me look petty, childish, and well… DEFENSIVE. A defensive stance and demeanor is not attractive on me (perhaps on no one).

I have learned two responses that work for me:

  1. What you have said has upset me. I need some time to regroup and then I would like to talk about what you just said (or called) me.
  2. I don’t believe in labels and discussing things with mean-spirited people. I would love to continue this conversation in a more healthy way when you are ready to do so.

You-re Ugly. You-re Fat. You-re Disabled. You-re Embarassing.

It makes me so sad when I hear people say self-deprecating things, knowing they heard it somewhere else first. Those “stuck in our head” kind of hurtful descriptions are usually hurled from the mouth of someone who claims to love us. It doesn’t always have to be wounding comments either. In my Developmental Psychology course, I ask my students to write down 10 things they have heard from friends and family members about themselves that were hurtful “to date”. It takes most students 10 minutes to write down 10 things; or, about 60 seconds per recalled comment. Then I give them a new piece of paper and ask them to write down 10 things they have heard from friends and family members about themselves that were encouraging, uplifting, and positive. It takes a student three times as long. That’s right. At 30 minutes I call “time” and there are always some who have not been able to come up with a full ten items. What does this tell us? Are humans more prone to remember negative or positive?

Negative comments are like wounds. They may cause us to bleed and to fester. Maybe infection sets in as well and our wounds begin to affect other body parts. Negative comments leave scars. No amount of vitamin E, cocoa butter, or cell activator products will remove the scar. Sure! Both time and perhaps counseling and support can reduce the visibility of scars, but the scar remains.

Positive comments seep into the skin slowly. Yes, perhaps our ears are the conduit, but our hearts are what build up our self-esteem. Dr. Barbara Fredrickson (OCDE.US, 2016), explains that there is a 3:1 ratio of necessary positive to negative comments to equalize the impact. In other words, for every negative comment you hear and take to heart, it may take three positive comments to remove the potency and harmful effects of the negative comment.

Permanent Brick Walls

Sadly, there are times when you must love yourself enough to initiate self-care in building a permanent brick wall to toxic people. It isn’t easy. There may be a price tag. You may alienate others who are affected by your choice. You may become the target for people who insist that forgiveness AND reconciliation are mandatory. My friends? There are times that this is a small price to pay compared to the continued damage a toxic person may deliver.

If they are incapable of remorse and change, who will protect us? Though it may sound attractive at our low points, putting out a hit on the toxic person is not a good choice. If we do not permanently dis-allow them opportunities to harm us, who will? When I have had to do this, I do so with heavy heart. However, I also do so knowing my children are looking to me for an example. Cuz ya know what? They are going to have toxic people in their lives. When I disassociate with a poisonous soul, I do so knowing that younger adults learning to live with acquired disability or illnesses are watching me.

It Doesn’t Take a Gift of Words

I don’t know about you… but I want to be a part of the group that is telling another something positive, uplifting and encouraging, and genuine. I want to be a part of the THREE that helps to cancel out the negative things another has heard and believed. All day–each and every day–I look for opportunities to say positive, genuine things to others.

“You look great in that color!”

“Wow, look at how well you did on this exam!”

“You always have the greatest things to say during class discussions”

“Thank you for emailing me about your current crisis. You are so responsible in that and I want to help you”

To people I know who are differently-abled:

“Those running lights on your wheelchair are freaking AWESOME!”

“You have the best hearing of anyone I know” (to a student with vision loss)

“You’ve told me about your personal demons. I love how you bravely and courageously face life with a smile”

“I love how Milo (my service dog) loves you. He must sense what a caring person you are to seek you out each class period”  (to a student with recent TBI who is still coming to terms with new challenges)

That’s All Fine and Dandy – But I Cannot FORGET

Yup. I can determine to be part of the solution (instigator of the positive in the 3:1 ratio), and still have STUCK negative comments playing over and over in my head. “♫ ♪ This is the song that never ends, yes it goes on and on my friend. Some people started singing it, not knowing what it was, and they’ll continue singing it forever just because… ♫ ♪ 

So what’s a person to do?

  1. Surround yourself with people who are positive contributors. You may not be able to pick your family and have tough choices to make about boundaries, but we can pick our friends. Make wise choices.
  2. Learn self-talk. “With practice, you can learn to notice your own negative self-talk as it happens, and consciously choose to think about the situation in a more realistic and helpful way” (Martin, 2016, para. 5).
  3. Be realistic about extremes and over-generalizing. I love these 7 “steps” to eliminating negative thinking. Check them out here: CLICK
  4. Affirm yourself. CUTE VIDEO of a little girl saying all the right things in 50 seconds: CLICK.  Perhaps talking to yourself in the mirror has fallen out of style (but should it have?). Regardless, we can learn to dispute that negative STUCK phrase in our heads. You gotta identify it first, then figure out where it came from, decide if it is true, decide how you want it to CHANGE, and then do #3 above. And hey… if preachin’ at yourself in the mirror helps? Go for it!

I leave you with the challenge to be someone’s 3. Be the positive, uplifting and affirming influence for another individual. Make it genuine (no lying… who does that help? I never say something positive I don’t mean/believe) It may take some practice. You have to learn to be watchful and observant. May God grant me the opportunity to be the 3 for someone! That these comments may re-play in a person’s head with the frequency of one-eyed, one horn, flying purple, people-eaters? Well, color ME PROUD.

Denise Portis

©2016 Personal Hearing Loss Journal

Fredrickson, B. (2016). The magic ration of positive and negative moments. Retrieved November 8, 2016, from https://www.ocde.us/PBIS/Documents/Articles/Positive+$!26+Negative+Ratio.pdf

Martin, B. (2016). Challenging Negative Self-Talk. Psych Central. Retrieved on November 10, 2016, from http://psychcentral.com/lib/challenging-negative-self-talk/

 

Can You Be Arrested for That?

My favorite cane...
My favorite cane…

I have friends who are police officers. One, Carl, is actually chief of police for a district in our area. I see him most Sundays, and tomorrow I plan to ask him, “Can you be arrested for that?” I love his sense of humor and he and his wife, Pam, are two of my favorite people. Though I know he will be witty, I also know he will be straight with me. Anything that pertains to the law, he’s gonna be frank with me.

Maybe I should back up though, and tell you the story? <grin>

First of all, I’m really tired. I could list you dozens of citations that link differently-abled people with fatigue and insomnia. I’m usually good about listing all those for you, but honestly there are over 26,000 articles since 2012 alone. (Yes… I counted, or rather Google scholar did!). But I digress…

When I’m tired I have a little more trouble filtering what I say. I am much more apt to just say the first thing on my mind. I’m trying to live with the “pause – respond” method (thanks for that Toby Mac post, Helen), and being mindful of not saying the first thing that comes to mind really helps. When I am tired though, I’m less likely to turn that filter on.

I have a dog in hospice care at home (sweet, retired Chloe), and I am very likely involved in way… too… much. Finishing my dissertation, teaching four classes, volunteering at a number of places; the list goes on an on. Just color me tired. This tired woman, with turned-off filter, entered Giant grocery store on Thursday. Milo-bear (my current service dog from Fidos For Freedom, Inc.) was tired as well as we had just completed a long training at the county police academy and he had a fairly long demo (that he NAILED). I only needed to get a few things, and so encouraged Milo for a last push before heading home.

When I’m tired, I wobble. <ahem> Ok. I wobble all the time. However, I wobble MORE when I am tired! I had one of the smaller carts, Milo, cane, and enough time that I did not need to rush. This didn’t seem to matter. I was a mess. I even wobbled when I moved my field of vision from one shelf to another. Being late-deafened, I do not always hear things in a big, cavernous store with lots of tile and hard surfaces. I turned suddenly, and almost plowed into a man standing there shopping with one of those hand baskets. He threw up his hands and watched me wobble, screech (just a little), and grab for everything stationary in my vicinity.

No face plant (this time). I whooshed out a breath of air, and locked eyes with him and was getting ready to say, “Wow. That was close“. He beat me to airtime, however.

“Well you are more than a little pathetic today, aren’t you?” with a grin and twinkle in his eyes.

Now… I’m late-deafened. I often mishear things. My husband could tell you a thousand stories about WHAT I THOUGHT I HEARD. He’s one of the few voices I can hear on a telephone, and has never let me live it down when he called and said, “Dinner at six?” I misheard and thought he said, “Dinner and sex?” Maybe inside I was thinking, “yes, please“, mature adult that I was said, “Excuse me…?” Yeah. That one has been hard to live down.

So this smiling man with a twinkle in his eye standing there waiting for me to respond, may NOT have said, “Well you are more than a little pathetic today, aren’t you?” I had to give him the benefit of the doubt.

Maybe he said “phonetic“. Eh, likely not since I only screeched and had not said anything.

Maybe he said “poetic”. I could dream.

Maybe he said “prophetic“. Perhaps he sensed I was getting ready to assault him.

To clarify, I said, “Ummm, pathetic?”

“Yes”, he replied, “because you….” his voice cut off because at this point? I had my cane raised.

I poked him with it. HARD. I’M pathetic? You’re the pathetic piece of humanity standing there making snide comments about people who are a little different than you!” 

He rubbed his chest where I poked him, mumbled something that I’m not EVEN gonna pretend I heard well or understood, and wandered off. I sat there hyperventilating.

Milo-bear looked up at me like, “Are we done yet?” cool as a cucumber. Me? My cucumber was fried.

As I stood there wobbling and taking deep, calming breaths, I gave myself a pep talk that the guy likely just had a poor choice of words. He seemed friendly, nice even. I’m sure he didn’t mean the way it sounded… the way I took it. I even had the grace to ask God that if He brought me face-to-face with the man later in the store, I would apologize and try to explain how his comment made me feel. Thankfully, I did NOT run into him, because… well I wasn’t really wanting to apologize.

Yes. I should have just moved on, or perhaps even “only” blasted him with my “how pathetic are YOU” rebuttal. I need to keep my cane to myself. (Can you tell I am preaching to myself?) Who knows why he chose the words he did. I make poor choices all the time.

And I do mean ALL the time.

So perhaps I need to practice the “pause method” even more:

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Denise Portis

© 2016 Personal Hearing Loss Journal

 

Boundaries & Brick Walls

brick

I’ve shared on “Hearing Elmo” before how important I think boundaries are to people with invisible illness, disability or chronic conditions. I believe we are already vulnerable. Not a WEAK sort of vulnerability, for we are actually very resilient in comparison to people who do not struggle with similar challenges. Dunn, Uswatte, and Elliott (2009) report that people with acquired conditions and challenges are often more resilient, happy, and have a positive sense of well-being. Yet, because we struggle to be all that we can be with new limitations, we can be vulnerable to others through criticism, disbelief, and lack of support. I believe that as people learn to cope and adjust to a “new normal”, boundaries–and sometimes BRICK WALLS–are imperative.

Boundaries

One of my favorite books that I often mention, is “Boundaries” by two of my favorite psychologists/writers, Cloud and Townsend. I highly recommend the book if you are seeking to establish healthy boundaries.

boundaries

I could go on and on about how MEAN PEOPLE SUCK, but this is more than that. We have all experienced interacting with people who are toxic, negative, and critical. These interactions inhibit our growth and our ability to cope effectively and successfully with challenges–that to us are not CHOICES, rather realities of living in our bodies. Boundaries can, and should be, set for these people. A boundary limits our interaction with someone that we have discovered hinders our growth or influence. Boundaries are not permanent. People can re-establish a good relationship. I always cringe when I hear people say, “Once you’ve lost my trust, you’ve lost it forever“.

I am not who I was. I hope that my life reflects a “work in progress”. I want to be a person who continues to grow each year that I live. I believe I can set a boundary for a critical and negative person, and my faith can be restored in this person at a later date. Life changes people, folks! The boundary keeps me at a safe distance, however, for whatever period of time is needed by that person to change or grow themselves.

Yes.

It hurts when you have to set up a boundary with a family member or someone who was once a close friend. Even these boundaries are necessary at times. Self-care is not only important, it is necessary. If we do not do what we must (by setting up a boundary for an unsafe person), we cannot thrive or make a difference in the life of another. Boundaries limit what we offer to these people. You may choose to not share specific things about yourself with them. You may limit how often you interact. These boundaries protect you and allow you to continue to live victoriously. They allow you to be the champion… the WARRIOR, that you are!

However, there are times when boundaries become more than safe zones for us. Boundaries can turn into permanent and impenetrable fixtures to completely cut us off from unsafe people. The boundaries become brick walls.

Brick Walls

When do you know that a boundary needs to be replaced with a brick wall? I believe…

… you will know.

The person has habitually harmed you. You have provided an avenue for reconciliation and  they have repeatedly taken advantage and continue to injure you. When this happens, it’s time for a brick wall, my friend! When and if you choose to permanently block someone from your life, it is important to remember:

  1. You are not responsible for their behavior.
  2. You are not selfish, nor stubborn.
  3. Your applied masonry skills mean you can continue making a difference in the life of others.

How do you build a brick wall and permanently dismantle a relationship? I have had to do this. It wasn’t easy. It hurts when it is someone who once mattered a great deal. However, self-preservation may mean you need to build that wall. Here are some things that worked for me:

  1. Block them from all social media outlets.
  2. Block their phone number.
  3. Block their email address.
  4. If you can, eliminate all face-to-face interactions.
  5. Don’t feel guilty. If you do, you are weakening that brick wall. You were not the toxin, they were.
  6. Avoid other’s efforts of reuniting you to this person. Well-intentioned people often do not know the whole story.
  7. If you must grieve the loss of this person, allow yourself to do so.

Because this is something I once did, I feel like I should give a warning as well. Don’t build walls because you are hurt and hunker down into protective mode. This is self-imposed isolation, not deliberate wall-building to keep out those who are toxic to you.

A perk I’ve discovered of brick walls? It can force a change of direction. You never know “who” or “what” awaits you as you step in the opposite direction.

Denise Portis

© 2016 Personal Hearing Loss Journal

Dunn, D., Uswatte, G., and Elliott, T. (2009). Happiness, resilience, and positive growth following physical disability: Issues for understanding, research, and therapeutic intervention. Retrieved September 5, 2016, from https://www.researchgate.net/profile/Timothy_Elliott/publication/232514358_Happiness_resilience_and_positive_growth_following_physical_disability_Issues_for_understanding_research_and_therapeutic_intervention/links/09e4150a3327348871000000.pdf

More Vulnerable than I Thought – Stronger than I Imagined

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Earlier this summer my parents came to visit. For some reason, I always have a “project” for my Dad. For some reason, he never seems to mind. This time, he built and secured a lattice porch screen to give us some privacy between our deck and the neighbor’s house. We have a huge yard, but it is long and narrow–not very wide. One of the first things my Mom and I did was plant Morning Glories. This beautiful vine has done so well this summer. It’s a childhood “feel good” memory for me, so I love greeting the blooms each morning.

I think one of the things I love about Morning Glories, is that they are (ahem) … GLORIOUS in the morning.

IMG_3129

I love coming out in the morning, in the quiet and cool AM environment, and having these cheerful flowers greet me.

VULNERABLE

I think one of the most difficult things about chronic illness and being differently-abled, is a sometimes, overwhelming feeling of vulnerability. I don’t know about YOU, but I hate feeling vulnerable. I’m not talking about the healthy kind of vulnerability where one learns to open one’s heart to another. I’m not talking about learning to be transparent and (at times) brutally honest (or, receptive of someone being brutally honest to YOU). I’m talking about the kind of vulnerability where you know you are at risk – in trouble – and floundering.

I am feeling pretty vulnerable. I hate having an illness that is progressive. Even though I work my butt off trying to be independent and capable, each year it seems to be more difficult to “get my glory on“. I love mornings. I’m a (disgustingly) cheerful early-bird person; perhaps, part of the reason I have been able to greet the Morning Glories with a smile on my face. While standing and watching the dogs race around the yard and work on waking themselves up, I often find myself reflecting, even praying at times. Lately, I think I’m perpetuating my feelings of vulnerability. During my AM REFLECTIONS, I have been thinking about where I was physically a decade ago, five years ago… and even last year. Ten years ago, when I was only 40-years-old, did I know that I would navigate with a service dog and cane? Did I understand that I would only be able to hear when I had my cochlear implant connected? Did I know that I would have a pronounced limp from numerous twisted ankles as the result of falls? Did I know that on the evening of August 23rd, 2016, I would have numerous bouts of vertigo, nystagmus, and several panic attacks between bedtime and when my alarm clock kissed me awake? (The benefit of having a service dog and retired hearing dog as your alarm clock). Nope. I didn’t know this would be my life. It makes me feel vulnerable (and depressed).

STRENGTH

I am my own cheerleader.

Don’t get me wrong. When I need encouragement, I know how to reach out and ask for help. This practice being, a different and healthy kind of vulnerability. If you are a person with chronic illness, invisible or visible disabilities, and special challenges that make life rather difficult at times, you may have no problem telling someone “I’m done“. I do have problems with that. I find it easier to say, “I’m struggling“, and less easy to admit “I’m done“.

I think part of it is because I don’t want to disappoint anyone. Even at Hearing Elmo, I try to keep things positive and encouraging. As a co-advisor of a student group for people who are differently-abled, I want to model confidence and a “can do” attitude. But honestly? Sometimes, I’m just done. This morning (after the night I had), I could not “get my glory on” in spite of my special flowers greeting me the same as usual in a beautiful late summer, sun-rise welcome. I found myself struggling. I found myself feeling vulnerable, depressed, and on the verge of giving up.

When I cheerlead for myself, I tend to default to a number of cheers:

  1. There are other people worse off than I am. Yet, they are productive individuals who find purpose in life.
  2. I have support from people who care about me, who encourage me to utilize everything I can to be independent.
  3. I am making a difference. It doesn’t matter if my niche in this big world is a tiny pocket of influence. If I can help make a difference in one, it is still making a difference. 
  4. All the things I enjoy, and people I love, are opportunities and relationships I would not have if I didn’t have the challenges I have.
  5. I know, without a doubt, that I am a better, stronger woman because I have Meniere’s disease and am late-deafened. Calhoun and Tedeschi (2014) explain it best: “The encounter with a major life challenge can also include an increased sense that one has been tested, weighed in the balance, and found to be a person who has survived the worst, suggesting that one is indeed quite strong” (p. 5). 
  6. Life can be difficult. It’s a good thing I’m STRONG.

Ultimately, the way I “keep on – keeping on” is recognizing that this is hard, but I CAN do this. I’m going to have bad days. I’m going to need help. I’m going to fail, mess up, SCREW up, and want to GIVE UP. When I am weak and vulnerable, I am also strong.

I’m also learning that it is ok to say, “I’m done“. (Ouch. That hurts to even type it!) However, I recognize that this admission… this vulnerability, also means I’m strong. Stronger than I ever imagined.

Denise Portis

©2016 Personal Hearing Loss Journal

Calhoun, L. G. & Tedeschi, R. G. (2014). Handbook of posttraumatic growth: Research and practice. New York: Psychology Press.

Let Sleeping Dogs Lie

My sweet Sheprador
My sweet Sheprador

In my opinion, one of the more frustrating truths about positive advocacy is the need for repetition. I understand that because my challenges and disabilities are a part of my life, adapting, coping, and sometimes “making do” are a natural part of each and every day. I also understand that because many people with whom I interact do NOT live with hearing loss and balance issues, what is second nature for ME never crosses their minds. The trick… and something I have been struggling with, is how often do I have to ask for accommodations? How often do I repeat the same ol’ request so that I can simply interact with others equally?

The above photo is of my current service dog, Milo, from Fidos For Freedom, Inc. Milo is a young Sheprador (German Shepherd/Laborador Retriever mix) who rarely sleeps. When he does, he sure is cute. ‘Course I’m a tad bit prejudiced being Milo’s partner. The phrase, however, “Let Sleeping Dogs Lie” originates from a proverb that means to leave something alone if it is going to cause trouble, or dredge up old arguments.

However, when we strive to promote positive advocacy and request accommodations (that were asked for before and are still not a habit for those providing the service, workshop, or seminar), when do we just “leave it alone”? One of my longtime requests is that speakers use the microphone, and repeat questions asked from the audience INTO THE MICROPHONE. Yet, time after time speakers say, “Oh I don’t think I am going to use the mic. My voice carries…” or, “I’m just going to put the microphone over here… you can all hear me, correct?” I’ve even had speakers have everyone in the audience introduce themselves and give some information about their background WITHOUT A MICROPHONE in sight!

I wave like a crazy person and “shake my head no” when speakers say this, and yet time after time I sit in meetings like this with no one using the microphone. At the end of conferences I fill out surveys about my conference experience and have tried to relay how important the microphone is to me. I’m to the point that I may stand up and create a mini-scene, asking them to use the microphone. As a person with hearing loss, in a large, cavernous room, I go from hearing 95% with microphone in use, to about 20% when it is not. Any idea how hard it is to get anything out of a meeting if you are only getting 20%?

I don’t even go the extra mile and request CART. It’s expensive. In spite of people with normal hearing asking for a copy of the transcript as well and my knowing it helps more than just ME, I don’t make formal requests for CART as a simpler solution WILL actually meet my needs. Entering a new school year with loads of meetings on my calendar already, I am to the point of “letting sleeping dogs lie”.

The only problem is, it isn’t in my nature to roll over and give up. So wake up, DOG.

Denise Portis

© 2016 Personal Hearing Loss Journal

 

 

When “LIFE” Happens and Your Glass is Half-Full

glass half full2

One frustration that I often hear from Hearing Elmo readers is that living with a disABILITY or chronic illness is “manageable” if only LIFE itself were a little easier. However, the old adage is true… “Life is hard“. It just is.

I take an unconventional interpretation of the “Glass Half Full” expression. I realize the original meaning is — Are you an optimist or a pessimist? I look at this analogy in a similar way that the “The Spoon Theory” describes energy levels, daily quotas of tasks, etc. For some of us, our glass is never completely full. I wake up first thing in the morning after a good night’s rest, and my glass is half full. Don’t get me wrong… I’m in a good mood. As a matter of fact, I’m one of those annoying “morning people“. I grin ear-to-ear, greet the dogs and take them out, fix my coffee, and eagerly open my calendar to see what the day holds.

Because I have had a hearing loss and Meniere’s disease for over 25 years now, I have learned to manage my time very carefully. I work hard to not “bite off more than I can chew“. The great thing about being an adjunct professor at a community college, I can stretch my 3-4 classes a semester out over the day and week so that I have “down time” for office hours or simply chill time in between classes. I am involved in a number of community service and social justice issues, but I work hard to make sure monthly meetings do not interfere with my “regular scheduled programming” (a.k.a. my LIFE).

Have you noticed, however, that just because you have a disABILITY or chronic illness, LIFE and its occasional sucker punches, still occur? We don’t get special treatment. Just because our glass starts out at the beginning of the day — HALF FULL — doesn’t mean that LIFE and the normal crap that happens within it, will not happen to us as well.

You are going to catch the flu.

You are going to have unexpected car expenses.

Someone is going to hurt your feelings.

You will be treated unfairly.

It is going to rain (and if you live where I do – it will rain a lot).

Your dog is going to be sneaky and eat grass and then surprise you with a present around 2 AM.

You may experience a divorce.

You may become estranged from an adult child or (once) close friend.

You will be accused of something you did not do.

You may be treated with disdain and anger as you navigate your “normal” in a world that does not view you as such.

A doctor is not going to listen to you.

A spouse or significant other is going to get frustrated with you – as if you can change your “normal”.

Your alarm is going to go off and you will want to hurl it through the window.

You will accidentally burn supper.

You are going to trip (and if you have Meniere’s – often!)

You will be misunderstood.

You will lose people you care about and will grieve.

Grief

Last week, my precious father-in-law passed away. My husband and children went to North Carolina and thankfully arrived before he was gone. I stayed home to take care of pets, cover classes for my husband, and “hold down the fort”. Can I just say I hate,  “holding down the fort”?

My family members are home now, and I am grateful I will have the opportunity to attend my father-in-law’s Celebration of Life later this summer.

I am running on EMPTY. This is final exam week and the extra stress that comes with grief and worry for my loved ones has taken a toll. You see… LIFE doesn’t pull any punches. Just because you have a disABILITY or chronic illness, you will still experience the normal things in LIFE that every person does. Losing people we care about is part of LIFE. It sucks. It hurts. It is hard. For those of us with a glass that starts “half full”, it may mean we need to take care to – TAKE CARE.

I normally go to bed between 9-10 PM. This past week I have made an effort to retire between 8-9 PM. We’ve had an excess of rainy weather which causes my balance to really be a trial for me. I am taking extra measures to make sure I change elevations carefully (stairs or bending) and am giving my service dog a serious work-out with various skilled tasks that I can do when my balance is not as wobbly. I’m trying to eat healthy, balanced meals.

Experiencing grief is a normal part of life. It cannot be avoided, and we cannot wish it away. If disABILITY or chronic illness is a new normal for you, I encourage you to prepare in advance for LIFE. We are not granted special privileges just because we have special challenges. So my advice is to do what you can to have a plan in place for when LIFE happens. The plan may include steps to take extra care of yourself. It may mean you make that phone call or send that email to someone you know you can dump on safely and wail or whine to your heart’s content. You may want to make an appointment with a counselor (so have one in advance on standby in the event you need an objective listening ear).

The Benefits

I learned something important over the last week. If I have prepared – as best I can – to absorb life’s normal sucker punches, and take steps to function in spite of a half-full glass, I can still BE THERE for those I care about.

I am not so energy-depleted that I fail to recognize the needs of others. I can support (as best I can) those who are grieving. Because I’m getting extra rest, I can think of small (seemingly) unimportant things that can make a difference in the life of my grieving husband. Like… making Cheeseburger Hamburger Helper for supper (something I cannot even eat but is his major comfort food). I can take on some extra chores around the house to give him the opportunity to have some extra time to grieve either openly or privately. I can be a listening ear (difficult but doable when you have a hearing loss). These simple things would be virtually impossible if I didn’t have a plan.

I am not so naive to believe that having a plan will mean you never have anything take you by surprise. LIFE is really good at surprises – some good and some bad. You cannot prepare and plan for every surprise. I hate to be a downer and fess up that at times I’m just DONE. For whatever reason, I allow hopelessness and despair to rule and reign in my heart and mind. For me, it helps to acknowledge that I’m at the end of myself and need help. It may mean seeking spiritual renewal. I may need to overhaul my schedule. I may need to just experience the YUCK. Sometimes all one can do is wade through and survive. The sun really DOES come out tomorrow. (… and thankfully? my weather forecast for tomorrow really does include SUN).

glass half full1

Denise Portis

© 2016 Personal Hearing Loss Journal

Mindfulness: And the Skies Opened Up

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I apologize for how long it has been since I have posted anything. I am one week from finishing all my coursework towards my Ph.D. and have been busy working, going to school, and finalizing my dissertation committee. To say I’m exhausted is an understatement. I try to be serious and mindful about how much rest I am getting. I was thinking last week when I turned the big 5-0, that I have now lived longer as a person with disABILITY and chronic illness than I lived without those challenges. It influences what I have chosen to study and what I am passionate about. When you are ABD (All But Dead — just kidding: all but dissertation), you tend to think about your dissertation each and every day. This means that everything I am reading and researching for the literature review of my own work is on my mind each and every day. I even dream about it! “Predictors of Posttraumatic Growth in Persons with Acquired Disability” takes up much of my brain power.

These past few days I have been “chasing a rabbit” (like my retired service dog, Chloe)  and reading published articles on mindfulness as it incorporates one of the major domains of posttraumatic growth. I suppose “mindfulness” started out as a Buddhist tradition; however, in the last 8-9 years, the field of psychology has come to recognize it as a means to treat numerous physical and psychological disorders. In my short personal history of 25+ years, I have learned that folks with acquired physical challenges–whether the result of illness, accident, or genes–also experience comorbid anxiety or mood disorders (Carson, Ringbauer, MacKenzie, Warlow, and Sharpe, 2000; Siegert & Abernathy, 2005; Weintraub, Moberg, Duda, Katz, and Stern, 2004). You do not have to convert to Buddhism to practice mindfulness. Kozlowski (2013), explains that mindfulness has been Westernized by psychology and “it is purposefully devoid of spiritual or religious connotations and focuses simply on the act of awareness. And if you want to take it to a level that we can all relate to and understand, at its core is stress reduction” (para. 5).

You’d think as someone who has worked so hard to hear again, I would rarely purposely “go deaf”. Yet, I have discovered that if I want to do some deep thinking, praying, and just spend some time being aware of all the “stuff” in my life, I have to reach up and click my cochlear implant off. I need the quiet to take the time to be mindful of what is currently stressing me (and how to de-stress), what my priorities are, and how I can make a difference TODAY in the life of someone – ANYONE. My bionic hearing is wonderful, but I cannot focus when my processor is busy – processing. So I “go deaf” – on purpose. I need to reduce distractions. For me that means being alone with my thoughts and perhaps a pad of paper nearby so I can jot things down as I think of them.

Mindfullness & Preparation

Learning to be mindful, meant that I learned to change how I view disABILITY and illness. I learned not just to experience my “new normal”, but to own it. With that acceptance came the understanding that I am able to make a difference in such a way that I would not have been able to had my “normal” not changed. I likely wouldn’t know the people I know. I would not have been drawn to studies about posttraumatic growth. I wouldn’t have chosen to invest my time in student populations of individuals with visible and invisible conditions. My life – that I embrace and love – would not be what it is today.

Learning to be mindful also taught me to prepare. I knew before this ten-day deluge of rain that I was going to have a much tougher time with my balance. I deliberately scheduled an additional hour of sleep each night, made sure I had my cane and service dog equipment ready to go each morning, placed my umbrella and rain boots by the back door, planned where to park to eliminate having to by-pass major puddles of standing water, deliberately stayed where I could see outside to determine when the rain had let up enough to take the service dog out or to make a quick trip to the campus testing center or copy center, and made sure that I allowed extra time to get to where I needed to go each day because I knew my mobility issues would require I traverse slowly and methodically. Even though the sun sets much later now that it is the month of May, I made sure that I had someone to drive me for evening obligations as I knew my vertigo would be worse by day’s end. Being mindful about the forecast and likely changes in my symptoms, meant that I could “hope for the best and prepare for the worst“. A nice little “perk” of Meniere’s disease is that if you learn to recognize the changes, you discover that you are a living, breathing, and walking barometer. (I’m likely more exact that local forecasters).

So… when the skies opened up, and delivered mist & sprinkles, steady, significant amounts of rain, and at times-torrential downpours, I was as ready as I could be! I suppose some folks might think that being so mindful and preparing for worsening symptoms, is the equivalent of being self-centered. I have learned the hard way, however, that if I do not take care of myself, it is impossible for me to take care of anyone else. I MUST take deliberate steps to insure I am prepared for long periods of rain, for example. If I do not, I will be nearly useless to anyone else. I’m not trying to avoid or escape the worsening symptoms I know are to come with a long bout of rainy weather. It is a type of cognitive-restructuring (from the psychologist’s point of view). As a person of faith, I work at being “mindful” of His promises. It helps me to remember He is mindful of me (Psalm 8:4, Psalm 111:5, Psalm 115:12, Romans 8:5-7, Romans 12:2, 1 Corinthians 2: 9-12, 16, Colossians 3:1, and 2 Peter 3:2).

A Long-Term Benefit of Being Mindful

In closing out this post (and greeting a day where the sun has finally breached the dark clouds), I want to share something I’ve learned simply because I really HAVE been at “this” a long time now. When you are mindful, purposefully focus your thoughts, prepare, and live deliberately, you will find that some good habits develop. On about “Day 6” of our recent monsoon-like weather, I came into my 8 AM class and… honestly? I wanted to go sit down and cry. I was tired of the vertigo, tired of the nausea, tired of the wobbling, and tired of the balance corrections. My head hurt and I was cranky. Darn — if it wasn’t only 8 in the morning! After booting up the computer, turning on the projector, and fishing out my lesson plans, I looked up to greet the class a few minutes before “launch”. I always try to ask students by name how things are going for them. I try to really get to know them and let them know I care. I noticed on changing my visual perspective an empty chair of a student who just buried her father. I caught in my peripheral, the quiet entrance of a young man making his usual unobtrusive way to his seat in the back. This young man just found out his cancer has returned for the fourth time. I saw the sleepy, single mamas and the students who took two early morning classes (including mine) before going to work for eight hours. I saw and waved to the student who attends classes, works four hours, and then goes to sit with her husband in a hospice center before staggering to bed each night. All the very temporary “woe is me” disappeared,

Just.

Like.

That.

Mindfulness doesn’t mean I do not have “bad days”. Being mindful, doesn’t mean I will always be in a super, good mood. However, being mindful gives me a better perspective and deeper appreciation for what really matters. I can more quickly rebound from self-pity and look for opportunities to make a difference – even in a sometimes “broken” body and weary mind. Being mindful allows me to wake up to a Milo-bear (service dog) alarm-clock with an attitude of “BRING IT ON“. For me… it makes a difference.

L. Denise Portis

© 2016 Personal Hearing Loss Journal

Carson, A. J., Ringbauer, B., MacKenzie, L., Warlow, C., Sharpe, M. (2000). Neurological disease, emotional disorder, and disability: They are related: A study of 300 consecutive new referrals to a neurology outpatient department. J. Neural Neurosurg Psychiatry, 68:201-206.

Kozlowski, E. (2013). Can Christians Practice Mindfulness? Huffpost Healthy Living. Retrieved May 6, 2016, from http://www.huffingtonpost.com/eden-kozlowski/mindfulness-and-religion_b_3224505.html

Siegert, R. J., Abernethy, D. A. (2005). Depression in multiple sclerosis: A review. J. Neural Neurosurg Psychiatry 76:469-475.

Weintraub, D., Moberg, P., Duda, J., Katz, I., & Stern, M. (2004). Effect of psychiatric and other nonmotor symptoms on disability in Parkinson’s disease. Journal Of The American Geriatrics Society52(5), 784-788 5p. doi:10.1111/j.1532-5415.2004.52219.x