The Selfless Practice of Self-Care

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

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

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

My Re-Make of an Old Illustration

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

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

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

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

… that doesn’t fit.

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

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

Ya gotta NOURISH to FLOURISH

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

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

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

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

Not if you handle turning down requests the right way.

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

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

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

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

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

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

Don’t apologize for practicing self-care.

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

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

and instead say,

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

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

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

L. Denise Portis, Ph.D.

© 2018 Personal Hearing Loss Journal

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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/

 

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

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

 

 

Use Your Words

use your words

Not too long ago, I stood in the kitchen with a piece of my kitchen cookware, and dramatically wiggled the (seemingly constant) loose handle.

“Hey, honey,” addressing my husband, “hand me the thingie-majig out of the… (I gestured wildly towards the drawer)… the… the… THINGIE!”

My husband turned to face me and raised his left eyebrow. It was only the left one. You know… the one he raises when I’ve said something truly ridiculous and he’s trying to make a point?

… with an eyebrow? Yeah. That one.

I continued to gesture holding the slightly, heavy pan and sputtered and fumed, not daring to repeat my request, only adding a bit of a head flick towards the… the… THINGIE.

At this point my husband’s raised eyebrow lowered. Instead both eyes grew wide with alarm. Both eyes. You know… the ones he widens in horror when he realizes I truly expect him to read my mind and decipher both thingie-majig and thingie?

“Denise.” (When he pauses like that not only do I know I’m in for a mini-lecture, but it also means it may be deserved).

“You canNOT expect me to actually know what you mean. We’ve been married a long time, but I know thingie-majig, thingie, whatcha-ma-callit, and doo-hickey are interchangeable, obscure references to whatever happens to be going through your brain at the time!”

Do you know I tried to argue with him?

“Terry.” (Cuz, what’s good for the goose is good for the gander).

“I’m holding a pan. I’m jiggling the loose handle. I need to use this pan. The handle is loose. I need a screwdriver. The “thingie-majig” is a screwdriver, of COURSE” (I sighed super loud for a little dramatic effect and continued). “I gestured towards the junk drawer with my eyes, head, and elbow. The drawer is the “thingie”. Now who wouldn’t KNOW THAT?”

His eyes lost their incredulous look.  It was like watching a slideshow of emotions flick over his face.

First anger. (“Is she SERIOUS?”)

Next came a sad effort at stifling his laughter.

Then that lightbulb look. I love this look. It’s a slow-simmer realization that darn it. “Darn it, she’s right! That kinda made SENSE!”

He scratched his head and bent to collect the screwdriver from the bottom junk drawer. “It sucks that what you said made sense”.

I demurely accepted the screwdriver and sweetly…

Kept.

My.

Mouth.

Shut.

… because it didn’t make sense. I didn’t use words! Well, I did… but they weren’t real words. How can I call that communicating effectively?

When We Don’t Use Our Words

When you’ve lived with a chronic illness or disability long enough, the vocabulary associated with it becomes second nature to you. However, it doesn’t become second nature to others. You know all the medical terms and acronyms associated with your “new normal”. You shorten things and abbreviate information with people who really do not completely understand what you are trying to convey.

So… use your words.

  1. Use specifics.

Don’t say, “I can’t hear well”. Instead be specific and offer an alternative that may help.

“I can’t hear well in this cavernous room with so much background noise. Can we step out into the hallway to finish this conversation?”

2. Don’t leave out details that actually assist in expressing your need.

Don’t say, “Will you watch the dogs for me while I talk to mom?” Instead provide some more detail so that your request isn’t unreasonable.

“The dogs are wound up and my mom is trying to FaceTime me. Can you take them outside while I talk to her for a few minutes? I will be able to concentrate and hear her better.”

Don’t say, “Oh my gosh I need to leave right now!” Instead provide the details for your hasty departure so that whomever is accompanying you can make polite excuses and follow you in a more polite way.

“Oh my gosh. The ceiling fans in here are low and are moving in the opposite direction of my inner ‘SPIN’. I need to step out right away”. 

3. Avoid acronyms unless they are truly universal.

A.S.A.P.  – – – Yeah. We all know what this means.

BPPV – – – To most with a balance disorder or Meniere’s disease, we understand this to stand for benign paroxysmal positional vertigo. Few others will know what this is. I have even discovered that within disability groups (types), members will often use acronyms that they think are universal to “us” and they are not. For example in a Meniere’s support group I belong to, the members constantly refer to Meniere’s disease as MD. As a volunteer and participant of a service dog organization that includes a number of mobility challenges, MD stands for Muscular Dystrophy for both myself and many others.

I have been surprised how understood and universal the acronym MS is. Many, many people seem to understand it stands for Multiple Sclerosis. Why is that I wonder? (I’m asking for real responses and not rhetorically!)

4. Don’t use cues unless you have practiced them and both you and your “helper” understand the cue. 

If someone has facial hair or talks behind their hand, I’m likely not comfortable stepping into their personal space to hear them better. I will turn to my husband and touch the corner of my mouth. This means, “What’d he say? Repeat for me please?” We’ve used this FOREVER and it works without any hitches for us now.

I have trouble in places that have huge, open areas, or extremely, high ceilings. I may “look” fine. But if I pick up the vest handle on Milo’s equipment and quietly ask for my husband’s arm, he knows I’m about to do a face plant. If my husband isn’t around, I take Milo’s vest handle and head for the nearest wall so that I may continue with whatever I was doing safely, or talking to whomever I was trying to talk to before my “Woah!” I have never had someone argue with me about moving towards a wall. (I’m pretty sure people would rather move than pick me up off the floor).

5. Complete your thought. Use real words.

Just because you know what you are talking about, doesn’t mean you can voice a sentence fragment.

“Put it over…” 

Put it over where? If the other person wasn’t watching, they do not know where you mean for them to put it.

Recently I got up on a step stool (never a good idea) to dust the ceiling fan blades in the dining room. The fan was OFF, so “color me SURPRISED” when I was hit with a sudden bout of vertigo and actually felt my vision tunnel as I struggled to stay conscious.

“Please! Right now!”, I screeched.

Manners didn’t matter. Specifics about the timeframe were irrelevant. I fell. My husband did hear the fall. Well… he HEARD the screech too, but he simply didn’t know what it meant. It was vague. It could have been meant for the dog who just stole my sock for the fourth time and I was demanding it back. (Hey. It’s happened).

He was horrified he didn’t interpret my call for help for him to actually get his butt there immediately. I hit the carpet and the dogs scattered safely out of the way. Since I didn’t injure anything (dogs included) I could laugh as soon as I made it vertical again. “Well geesh. It’s not like I called your name or explained why I needed you! I should have said, ‘Terry! Come quick!’, right?”

As fond as I am of “thingie-majig”, “thingie”, “doo-hickey”, and “whatcha-ma-callit”, they aren’t words. They stand for whatever word is missing from our immediate working vocabulary. They are stand-ins, and we simply cannot expect someone to make sense of them. When it comes to our challenges and self-advocacy, it makes sense to —

Make Sense.

Use your words.

Be specific.

Use necessary details.

One final word of advice though. Sometimes we work SO hard to be good communicators, we may offer a little too much information. If I throw the acronym at ya, of T.M.I., — does that make sense to you?

Too Much Information. We can blow people away with unnecessary details and specifics.

Several weeks ago I ran into one of my students in the hallway and we were headed in the same direction. He opened the door to the stairwell and I leaned over to hit the elevator call button. He said, “Oh here, let me carry that” and reached for my bag assuming I would be able to take the stairs if someone carried my bag.

I said, “Oh no. I can’t take the stairs. Even though I have Milo it will take me ten minutes to make it up one flight of stairs. I’ll be late for class. I just can’t traverse the stairs safely at top speed. I need to wait for the elevator. I don’t always wobble, or have bad balance days, but I never climb or descend stairs safely”. By the time I finished with my over-zealous answer, he was practically cross-eyed.

“TMI?” I sheepishly asked.

“A little… but we’re cool!” he cheerfully responded. He ended up taking the elevator with Milo and I because we were headed to the same class and were discussing something he was passionate about – projective tests (ugh. Hate them!).

So just be careful about being specific and detailed, without killing someone with unnecessary information.

Denise Portis

© 2016 Personal Hearing Loss Journal

 

 

 

Apocalypse

apocaylpse 2

My husband teases me about my addiction to apocalyptic movies. I’ve seen so many, and new ones come out each year! My husband assumes that the reason I love them is that I do have a pessimist’s soul. I’ve tried hard to change this and I’m certainly more optimistic at “almost 50” than I was at “almost 30”. However, that “end-of-the-world” vibe is not why I love apocalyptic movies. I love them because normal people rise to the challenge and become real heroes. One I recently saw was “San Andreas Fault”. Even though it was a good movie, “The Rock” (the leading actor) is not a “normal person”, nor did he play a normal hero. (At least his acting has improved over the years…) My favorite “end-of-the-world” movies are those in which folks with normal jobs “rise to the occasion” and discover who they really are in the midst of turmoil, tragedy, and overwhelming odds.

Coincidence, or Logical Comparison?

Each semester, one of the extra credit options I offer to my students is called, “disABILITY for a Day“, or d4D. I co-advise S.O.D.A. (Students Out to Destroy Assumptions), a student club focused to raise awareness and advocate for disability populations. In the extra credit opportunity, the students must “take on” one of a list of pre-selected disABILITIES. We limit what they can choose, so that students are not taking on a disABILITY that may perpetuate a stigma, such as a mental health disorder. The choices are hearing loss, vision loss, mobility (ambulatory) challenges, and fine motor skills. Students are provided with ear plugs, or an eye mask, encouraged to borrow crutches, walkers, wheelchairs, or they can tape one or both hands into a sock to limit their fine motor skills. We ask that the students take precautions… no driving, or trying to work off campus; if vision loss… secure a sighted guide for the day, etc. Students must:

  1. Complete a class rotation with their disABILITY
  2. Answer 10 essay questions and read an article about living with disABILITY
  3. Write a reflective essay on their experience (or a video testimonial).

I was quite surprised that five students from four different classes used the same phrases in their reflection assignment. To my knowledge, these students do not know each other. Here are the similar wording or phrases used in response to the question, “What was the most difficult part of being disABLED for the day?”:

  1. “felt alone”, “if this were for real it would be like the end of the world”
  2. “I became invisible, no one even looked at me”
  3. “It was like the apocalypse happened. It was surreal, walking around in a world that completely ignored your existence. I felt like I had the plague”.
  4. “It’s like a bomb went off and I was the last person standing. I have never felt so alone”
  5. “Even my professors ignored me. I felt so alienated. It felt like the end of the world or something.”

When I see similar phrases showing up, I take notice. Is it just a new way young adults are explaining isolation, discrimination, and stigma? Interestingly, in essays this year, many of the students reflections included seeing a person they knew with disABILITIES with “new eyes”. Many were convicted to do a better job reaching out and including those who are differently-abled. One student shared, “I go to class with a girl who has fine motor [skill] challenges. I chose to tape up my hands for my disABILITY. She was so excited to see what I was doing and gave me advice during class [about] note-taking and doing a team activity. She always has a smile and doesn’t try to hide her issues at all. I admire her so much. If I ever develop disabilities, I want to be like her”. 

I’m so glad I grade essays at home. I read similar accounts from other students… a new awareness about what life is like for those living with what was their chosen disABILITY — only 24/7. I can’t tell you the number of times I cried at my desk. Not happy tears, and not sad tears. It was more of a WHEW tears.

WHEW. They get it.

I’ve never met a person with special challenges who WANTED those challenges. One of my students is legally blind. I was talking to him last year, and we got to talkin’ about acquired disABILITY. He didn’t lose his sight until his 20’s, which is when I began to lose my hearing. We discussed how we respond/think when people say how much they admire us now. He said, “Geesh. At no point did I say, “SIGN ME UP for being blind”. I didn’t ASK for this. You accept, adapt, and go on”. Isn’t that a terrific, healthy way to respond to challenges?

I (proudly) serve on my county’s Commission on Disability Issues and immerse myself in various local, state, and federal advocacy groups. Do you know that I am surrounded by heroes? Normal people with normal lives, forced to accept and adapt to significant issues. It may not seem like the apocalypse occurred – or that the end of the world is near. But… I can tell you that it can be hard. This doesn’t mean folks who are differently-abled or face significant daily challenges need Academy awards, fan clubs, or media coverage. We don’t want/need to see our “name in lights”, or for people to tell us how wonderful we are. Simply:

Include us

Befriend us

Hug us

Hire us

Believe in us

Advocate for us

Advocate? That’s right! The most important advocacy force comes from self-advocacy. However, peer advocacy, system advocacy, and legal advocacy are all highly effective forms of advocacy.

A new year is right around the corner. May I challenge you to try something in 2016? Advocate on behalf of another. Thomas and Bracken (1999) argue that peer advocacy is one of the strongest types of advocacy. You may find opportunities at work, church, or standing in line at the grocery store (check out video). You may be able to advocate at a local coffee shop (see video), or be able to participate in hiring panels. Just make sure it is advocacy that is WANTED. Be careful to avoid embarrassing someone, or advocating in a negative way. If you have the opportunity to advocate on behalf of another, I’d love to hear from you!

Thomas, P. F., & Bracken, P. (1999). The value of advocacy: putting ethics into practice. The Psychiatrist23(6), 327-329.

Denise Portis

© 2015 Personal Hearing Loss Journal

Polygamy and Practice

polygamy and practice

Do you know how many times polygamy has cropped up in my conversations? It’s super easy for me to hazard a guess because I have NEVER had a conversation about polygamy. I don’t watch “Sister Wives”, and know very few Mormons (and those I do – do not practice polygamy). So why… WHY would I bring the word up in a chance encounter? *shaking my head at myself*

I’m a creature of habit. I go to the same stores and the same restaurants. I’m super scheduled and my electronic calendar is near and dear to my heart. I’m color-coded. I’m organized.

Therefore, it’s no surprise that I tend to run into the same people at the places I frequent. I have shopped at the same grocery store for almost four years. You tend to run into some of the same people when you frequent a store. When you go everyplace with a service dog, it makes you rather unforgettable, especially with children. It’s no surprise that I see some of the same children in stores who have been curious about and thrilled with Chloe as I shop.

It shouldn’t have surprised me that a little boy I have seen a half a dozen times or more stopped me to ask about my dog. My new partner is Milo, a black shepherd/lab whose appearance is completely different than that of Chloe. Here is a recent photo of both Chloe (retired) and Milo (current). The picture isn’t that great which reminds me I need to work on getting some more “3 musketeers” shots!

Service Dog Bookends
Service Dog Bookends

This little boy that I see occasionally (whose name I DO NOT know – which embarrasses me as he knows my service dog’s name), looked at me with big eyes and said, “Where is Chloe and WHO IS THAT?” (Ya gotta love kids)

I replied, “Oh, this is my new service dog, Milo. Chloe is retired now and is at home sleeping on the couch”.

He looked very solemn and said, “So she still lives with you?

Oh yes“, I said. “She will always live with me. It’s just that Milo is my new partner!

He was quiet for a second or two and said, “So it’s like you are divorced and Milo is your new service dog?

I was so astonished by the seemingly change in topic I stuttered out, “Well… ummm…. no, not at all. Chloe and I aren’t divorced. I guess it’s more like polygamy and both dogs live with me now!

The little guy look TOTALLY CONFUSED, and I glanced up to see the HORRIFIED LOOK on his mother’s face. Ever want to just slap your hand over your mouth? I knew as soon as I said it that it was 1) totally inappropriate, 2) would take the mother all day to explain to her son, and 3) completely “off the wall”.

I made a mess of trying to back peddle (for people with balance disorders can do precious little BACKWARDS), and hurriedly made my way down the next aisle.

I stood in the international food section fussin’ at myself and nearly in tears for using such a poor analogy around a 6-year-old. I determined then and there I needed to PrAcTiCe PrAcTiCe PRACTICE what to say in response to “where’s Chloe and who is THIS?

Part of Good Advocacy is Practiced Responses

Being a good advocate and representative of “whatever ails ya” means you have good responses when someone asks questions. I have learned the HARD WAY, that these responses need to be rehearsed. When you are taken by surprise by either well-meaning, curious people or rude, snarky trouble-makers, you want to have a measured, helpful reply so that you advocate in a positive and helpful manner. I have found that if I don’t have a “canned response”, I tend to match the tone and demeanor of the person asking. This means that sometimes I am pleasant and in “teacher mode”, with great responses that educate and advocate on behalf of the disability community. However, other times I’m waving my cane in a curmudgeon’s face and informing them in no-uncertain terms how horrible they are.

At Fidos For Freedom, Inc., (where I trained for now – TWO – service dogs), we practice how to respond when encountering access issues. If you have a service dog, it is not a matter of IF you have access issues, rather WHEN you have access issues. It is easy to get flustered. It is easy to get mad. It is easy to say the wrong thing. Practice makes it much easier to respond with something that will actually help you and others like yourself.

Doesn’t it Suck that Many of the Rude Ones are “Kin”?

What is even harder is when the person acting incredulous and skeptical is someone you know well or are even family. I’m lucky that I have a very supportive spouse and adult children. Even so… it is hard to love someone with a chronic condition. Once in awhile, my husband (or kids) do not filter what they are saying, because they, too, are sick and tired of Meniere’s disease. I’m 100% certain my husband has rehearsed responses to commiserate appropriately so that he doesn’t spend the night on the couch.

(Holding an ice pack on my cheek, or head), “I’m so tired of falling and staggering around! What I wouldn’t give for just one day of no vertigo!

It must suck, honey!” is the rehearsed response so that “Yeah, I’m getting tired of taking off work to take you to the E.R.” doesn’t slip out.

It can really hurt when someone who knows you better than others “opens their mouth and inserts foot”. I recommend that even support people practice and learn how to deliver sympathy and encouragement.

You Will Still Blow It

Even if you practice measured, helpful responses to personal questions, you are still going to blow it from time to time. A couple of Sundays ago I was ticked off at myself for not responding kindly to someone and was thinking, “Denise! You’ve had this diagnosis for 2 decades! Exactly WHEN is it gonna become HABIT?

I sit during the worship service. It isn’t because I cannot stand. Folks are surprised when they learn that at work, I stay standing for very long periods of time. I actually MOVE very easily and with very little wobble. It’s standing still that is the problem. My world turns… counter-clockwise when I’m standing still. I love my church. They are very supportive of people who are differently-abled. We have a loop system in the auditorium for people with hearing loss. We have fully accessible bathrooms and classrooms. We have an elevator and a lift for people with mobility issues. In spite of this, I’m forced to sit during the worship service. My church puts the words to the songs on the wall using a projector. We have a beautiful stage and lights as well. The song lyrics are in a multi-media slide show with patterns, colors, movement and lights. Everything is color-coordinated and changes song to song. The freaky OCD person in me is in awe every Sunday. It’s gorgeous! But… I can’t stand. If I do, I’m fighting consciousness. It isn’t a problem, for I don’t mind sitting. I’m comfortable and SAFE. I learned that not everyone understands why I’m sitting, however.

An elderly person came up to me at the beginning of the service and asked me how to access the hearing loop in the auditorium. I removed my cochlear implant and hearing aid and demonstrated how to switch to t-coil. I get this question about once a month and I’m always glad to educate. I love the hearing loop and it has dramatically transformed church for me. I love answering questions to help others access this wonderful technology. So wasn’t I surprised by the encounter, but totally floored by the follow-up question:

So why are you seated during the music? I’m way older than you and even I can stand!

I don’t know if it was the environment, the timing, or the unexpectedness of the question, but can I tell you … I really took it wrong? I could FEEL the tension creep up my spine and I was mentally counting to ten and trying to diffuse the explosion about to spew out of my mouth. THIS ONE I hadn’t practiced for. I hadn’t run any scenarios through my head and out through my heart filter to answer a question like this appropriately. So I didn’t.

Wow. That was really, really mean. We’re done,” I said. The person looked startled, then uncomfortable and walked away. I think the last action was because I’m certain my look was murderous. I mean… I was MAD. (I later apologized).

Folks are gonna take you by surprise once in awhile. You will hear an insensitive comment from someone you weren’t expecting it from and it will just shock you into silence (if you are lucky) or cause you to say something you regret. It is best to be prepared.

Ummm… WHY SHOULD I?

Maybe you are thinking that if people are going to be insensitive and inconsiderate, that “why should I temper what I say in response?

Since we are on the subject… here are some “canned responses”:

1. You don’t want to sink to their level.

2. You need to be the mature one.

3. Kill ’em with kindness.

4. In the end, you advocate for all of us.

5. Honey attracts more bees than vinegar.

Well.

I happen to love vinegar. I mean… don’t get me started on pickles. There are few things I love more. Let’s be honest though… from someone who is differently-abled to someone who may also live with acquired disability, chronic illness, or invisible issues, “WHY should we be careful in our response?

(sigh)

Because it’s the RIGHT thing to do. Sucks, don’t it? I can tell you from experience though that it is much better to answer correctly and watch someone else squirm, than to have to apologize for “going off” on someone. Go practice, my friends! You’ll be glad you did!

Denise Portis

© 2015 Personal Hearing Loss Journal