My Name is Milo and I Was Afraid of Fidgets

 

My name is Milo and I’m afraid of Fidgets

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

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

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

NOT VERY HELPFUL.

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

Desensitization

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

… so I bought one.

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

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

I found Milo in the walk-in closet.

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

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

Facing Our Fears – and Perhaps Desensitizing Ourselves to Them

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

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

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

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

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

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

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

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

Let’s face it.

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

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

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

Denise Portis

©2017 Personal Hearing Loss Journal

 

 

 

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A Prisoner of STIGMA

Tonight (4/19/17) is the 2nd annual d.A.M.N. event (disABILITY Memoirs and Notes) at Anne Arundel Community College. I was asked to share my presentation on Hearing Elmo.

PowerPoint: https://app.box.com/s/qkdo19k20djznhlpeezo7js24ik5f0mn

Presentation:

My name is Denise Portis and I teach Psychology courses here at AACC.

 

Thank you for coming to our 2nd annual d.A.M.N. event.

 

Today I want to talk to you about being a prisoner of STIGMA. I have been a disABILITY advocate for 25 years. It was not very difficult for me to reveal hearing loss and Meniere’s disease. However, the disability that had the greatest impact on me was mental illness, and THAT I chose to hide from everyone outside my immediate family.

 

SLIDE 2

 

What is a stigma? A stigma has SHAME attached to it. One source defines it as a mark of disgrace associated with a particular circumstance. If anything is well known for having a stigma associated with it, it is mental illness. I didn’t want my friends to know, my co-workers to know, my parents or siblings to know, or even my children to know until they were much older. I had become a prisoner of the stigma attached to mental illness without ever going to trial. Yet, I was as incarcerated as any person charged and tried.

 

SLIDE 3

 

I have struggled with depression and anxiety most of my adult life. I tried to hide it and even get help for it quietly, being careful not to reveal my diagnosis to anyone but those closest to me. I had heard that publicly owning it would follow me in my medical records. People would think I was unstable, unreliable, and needy. I had heard a number of accusatory and negative comments once I began choosing who I would disclose this to. I’m still surprised I didn’t allow early comments to zip my lips and go back into my jail cell, remaining a prisoner to the stigma. However, I began to experience real freedom in acknowledging what was wrong with me. That acknowledgment changed the wrong to right. For the first time I was able to understand what my diagnosis were. Mental illness is an illness. It isn’t chosen, it can be treated, and a victorious life could be mine, So I began to tell EVERYONE. It became a very real part of how I chose to be an advocate. For me, transparency worked.

 

SLIDE 4

 

And yet, throughout my determination to live free, I saw people who were given a death sentence because of their mental illness. Amy is one of my heroes. If you’ve heard of Project Semicolon, you’ve heard of the movement she began. Amy said about Project Semicolon, “In literature an author uses a semicolon to NOT end a sentence but to continue on. We see it as you are the author and your life is the sentence. You’re choosing to keep going”. Amy took her own life last month.

 

SLIDE 5

 

Luis Montalvan came to speak at AACC in 2015. Many of us in the SODA club even had our picture taken with him. Luis was a national and renowned speaker about PTSD and travelled with his service dog, Tuesday. Luis took his own life in December.

 

These two individuals were very open about their mental health disorders. Being open made a difference. Both actually found doors of opportunity available to them because of their openness. I have to tell you when I first heard about both of their deaths, I cried. I shed tears because I know what it is like to get really tired of facing a new day with mental illness. It is hard. Even though I have chosen to surround myself with people who accept me exactly as I am, even though I am open and honest about my disabilities and refuse to be a prisoner of stigma, I totally GET what it feels like to WANT to give up.

 

Are Amy and Luis cowards? Do I have something they do not? No, and NO. Their lives and their deaths simply act as a reminder to all of us that mental illness is HARD. The way I combat the hopelessness and the aloneness is by being open. I present my story and my choice simply as a way for you to examine if this will work for you. If stigma is crippling you and making you feel like a prisoner, you may want to consider a jailbreak.

 

SLIDE 6

 

Be vocal. Fight in the open. Insist on acceptance and understanding. You may not find it in your current group of friends and family. I’m not telling you that you should walk away from THEM. I am asking you to look for revealers. Look for people who do not shy away from the diagnosis, who have learned not to be ashamed nor captive to their illness. They are out there. They can be found.

 

SLIDE 7

 

At AACC the SODA club makes it easy. The group is committed to being assumption destroyers and helping to erase the stigma associated with all types of disabilities. Those that are visible and easily seen, and those that are invisible and are only known upon “reveal”. We call our group superheroes. Their super powers are different. Each have strengths and each work hard to make a difference in a superhero kind of way. If you are looking for a place to make a difference on campus and within your community, we invite you to be a part of SODA.


L. Denise Portis

© 2017 Personal Hearing Loss Journal

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

 

More Vulnerable than I Thought – Stronger than I Imagined

IMG_3128

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.

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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.

When Rules Don’t Apply to YOU

dog-with-pen

*tongue in cheek*  It ROCKS when a guest writer chooses to post here at Hearing Elmo. I welcome guest writers and if you ever feel the “itch” to write, email me at denise.portis@gmail.com  Today’s post comes from Milo-bear, my second service dog.  Let’s welcome newbie writer, Milo, to the blogosphere and trust that what he has to say can be echoed by many service dog teams.

I have working clothes. Don’t laugh… you have them too. I pretty much have a great time side-by-side with my human partner 24/7. However, when my working clothes go on — my vest — I am having fun WORKING. Oh… I also happen to be GQ handsome.

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Denise has had a lot of people come up to me that she does not know asking to pet me. When we know the person already, Denise actually likes for us all to say hello because I can be kinda aloof and she doesn’t really want that being a teacher and all. She draws the line at sniffing butts though so I have learned to lean, wag, and keep my nose to myself.

Sometimes though, a total stranger comes up and starts talking to me. One day last week at the craft store, someone came up and leaned down to talk to me totally ignoring Denise. If they had been paying attention, they would have seen Denise desperately gripping the shelves and trying to keep from wobbling as this person invaded our space. The stranger said, “Oh I just love working dogs. I have always wanted to see if that was something I could do… train working dogs. Oh my, you have a very cool vest pretty boy. Don’t you look handsome!?” Now – mind you – I couldn’t argue with the handsome part, but this gal was missing two important clues:

  1. My vest says “Do not Pet” and “Do Not Distract
  2. I neither speak NOR interact with strangers. They are STRANGE.

I was so proud of Denise! She hates to make people feel badly, and at times she puts herself at risk by not standing up for herself. Perhaps it was because she was wobbling SO MUCH, that she immediately chimed in on the tail end of this stranger’s gushing intrusion to say, “Yes, isn’t it a nice vest? Complete with patches asking you not to pet or distract him”. 

I would have high5-paw’d Denise, but hey… she was wobbling enough and I didn’t want her to do a face plant. The stranger kind of sputtered and backed away. Then with a huff, she turned on her heel and walked away. I yawned really big trying to relax and Denise scratched me behind the ears and talked quietly to me. I didn’t understand everything she said, but it was something along the lines of just wanting to shop without the drama.

Denise doesn’t partner with me to create drama. I’m her helper to reduce the drama. She wobbles less when I’m by her side. If she drops something I get it for her. And ya know something? My gal pal drops things A LOT. I’m ok with that because – heck. I get paid to just pick it up and give it back to her. I have the world’s best job. I do things that are super easy for me and get treats and affection for my efforts! If Denise  reaches for dropped items, she tends to end up on her butt – which I have to tell you is OK with me too because I can easily kiss her whole face when she is eye-level.

When I know someone, the whole scenario is different. For one thing, I don’t stiffen up. I usually start to wag like crazy. I just can’t help it. When I see a friend my tail just wags and wags. Denise releases the tension some on my leash and I can say a quick hello. When it is a stranger though, I’m nervous and she is nervous. I’m thinking, “WHY are they talking to me? Who IS this strange person staring at me and in my space?”

A couple of weeks ago, Denise and I had a break after a class. This was before the pant-’til-you-drop heat hit our area. We were sitting outside on a bench enjoying the sunshine. I was double-daring a butterfly to come a little closer, and Denise was checking her email on her phone. Some students came pushing and shoving their way around the corner and then stood right in front of us. Denise was a little startled, but continued to sit and check her email. I was SERIOUSLY uptight. I mean… they chased off my butterfly! Boy was I peeved. And then you know what they did? They all had their phones out and were jostling each other and pointing their phones at us. Here I was surrounding by all these noisy and rowdy strangers, and all of them were pointing their phones at us. My hair stood up and I made sure Denise could feel my tension all the way up through the leash. She looked down at me, looked up at the students and said, “Ummm. Let me guess. Pokemon GO?” They completely ignored her. Thank goodness they didn’t hang around long. I was starting to get really antsy. After they left Denise reached down to scratch my ears again.

“People can be clueless sometimes, Milo. Don’t let them bother you. I would have moved but DARN IT. We were here FIRST”. 

I sighed really loud and pouted about not getting that butterfly. I tell ya what, I just don’t get people sometimes. I worked my butt off all morning, showing Denise where sounds were coming from, picking up things she dropped, and standing behind her while she wobbled at the board. She calls this command “WRAP”. I just call it smart, because it only takes my touching her on the back of the legs to keep her from wobbling so much. Anyway, I worked my tail off this particular morning. Well ahem, not literally of course. I just wanted to rest a bit – and yeah ok. I wanted to eat that butterfly, too. Instead, rude strangers caused me to get my hackles up. SMH.

Some people don’t think the rules apply to them. It’s just common decency to not invade someone’s space, make a lot of noise, and point your phone at them. That’s a rule even dogs understand. When my pack mates put their butt in the air and wag their tails at me, I will come over and say hello. If they are laying still and have their face pointed away from me though, I figure they are staring down a butterfly. This body language and lack of eye contact means that I know to stay clear. Especially my older sister, Chloe. That girl can be Grrr-ummmm-py! She still does the kitchen timer alert for Denise, and let me tell ya… you better get out of that girl’s way when the kitchen timer goes off. I watch her body language. I know when Tyco wants to play and I also know when his legs hurt and he wants me to leave him alone. People need to just pay attention to my body language when I’m trying to help Denise. Better yet, they need to know the patches on my vest are rules to be followed. Not because I’m snooty. I have a job to do and can’t do it if you come into my space and act like we are best buds.

I know what strangers are. When Denise’s classes start, everyone is a stranger. However, the students that sit in the front are students I start to recognize. After a few weeks of class, sometimes when Denise is talking I will lean over and put my head on a student’s desk and make goo-goo eyes at them. They aren’t a stranger anymore. At this point though, WE KNOW EACH OTHER. They may laugh and tell me I’m a silly boy, but it doesn’t distract me because I know them. Even knowing me they don’t take advantage. They know the rules. Towards the end of the semester, Denise will take off my vest right after class. OH BOY! I get to say hello to all the front-row students. Naked=Right to Visit. I take advantage of any naked time I can get.

So I guess what I am trying to say is that I know seeing me where you shop, eat, or work grabs your attention. I thought I gathered folk’s attention because I am so incredibly handsome. I’m sure that’s part of it, but it is also because some people just love dogs. Let me tell you a secret though. One of the things I’m most proud of is that Denise shops, eats out, and works because I make that possible. She told me that before Chloe she was almost house-bound. She was scared to do anything because people would jostle her when she didn’t hear them and knock her down. After Fidos For Freedom, Inc., came into her life — first with Chloe and now with me — she went back to school, went back to work, and shops alone. Listen up though… if you are a stranger and invade our space and make a grab for me? Well Denise goes back to being in danger of falling really fast. That makes her nervous again. If we know you, it’s different. Think about it this way: Would you go up to a stranger and only talk to their kiddo, and reach out to touch them without asking? Sometimes I sigh and wish I could say, “AHEM. The eyes that matter are up HERE“, and swing to point at Denise’s face. Denise said, “eyes up here” is kind of kinky and doesn’t mean what I think it means. So I haven’t tried to correct anyone with that yet.

Rules are rules. If you see a service dog with a partner in public, it may be obvious at first glance why that dog is with that person. A lot of times, though, it may not be obvious at all. Just trust that a working dog is WORKING. If you do not know them, let them shop. If you do not know them, let them eat in peace. If you do not know them, let them work and do their job. Service dogs are like a piece of adaptive equipment. You wouldn’t pet Denise’s cane would you?

A specific exception for just Denise, is that if we know you it’s great to say hello to me and scratch my ears for a minute. Denise wants me to know that there are friends in the world and to recognize them. If I don’t know you though, how about you just let me do my job? That way Denise is safe and I can focus on why I am with her. If you have to take a picture of me, cuz seriously I’m drool-worthy, just be sly about it and don’t make a scene.

Milo-bear Portis

Successor dog extraordinaire

 

 

My iPhone Lasts Longer Than I do

iphone 6+

The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead phone in hand trying to figure out if I had charged it overnight — the night BEFORE — like I usually do. After hitting <rewind> in my head and backtracking over how my day BEGAN, I realized that I fished my smartphone out of my pocketbook before heading out the door this morning. That means I did not charge it last night. That means my iPhone lasted over 36 FREAKING HOURS! I was impressed. As impressed as I was, I STILL went and hooked it up to the charger. It was dead. It had to be charged.

As I fiddled around with the (stoopid) cord, (made difficult when you lack any kind of pincer grasp in your fingers), I thought, “Wow. My iPhone lasts longer than I do! I could never go 36 hours without being recharged!” And ya know? That made me a little sad.

My next thought was, however, “NOW WHY DOES THAT MAKE ME SAD?

STOP Apologizing

I hate that my default to what is normal for ME, is to feel sad about it or to apologize to myself and others. Why do we do this?

Well according to Wright (1983) and Nosek et al., (2003), people who are differently-abled and chronically ill, default to apologizing and providing unnecessary explanations and dialogue about their condition to smooth the way of acceptance. These same authors point out that this often backfires. We instead bring attention to something others may not even notice. Apologies convey regret over intentional or unintentional offenses or failures. Apologizing for needing a nap, needing to relocate to a quieter room, asking someone for a repeat, or request to stand closer to a wall to keep from toppling, is not something we should REGRET. It is not a failure. It is what it is.

I would argue that falling into the habit of apologizing for our “normal” creates a dangerous pitfall and trap that our disabilities or chronic illness are an undue burden on others. This could lead to becoming preoccupied with how hard you are making life for others. Russell, Turner, and Joiner (2009) found that individuals with disability or chronic illness already have a higher tendency towards suicidal ideation. Apologizing for something we are not responsible for only creates a perfect and toxic breeding ground for suicidal thoughts.

Putnam et al., (2003) explain that true independence and self-determination falls closely on the heels of acceptance… that can only take place when we stop apologizing for our “normal“. I use to apologize a great deal. In spite of using every piece of adaptive equipment I could find and afford, in spite of partnering up with a service dog, and in spite of reading everything I could get my hands on about positive advocacy and independence, I would still apologize for putting someone else out for helping me cope with a situation. I’m trying to do better. For example:

Instead of “I’m sorry. Could I get you to move over to that wall over there so that I may lean against it and have Milo (my service dog) on the left while we speak? I hate to ask you to move, but…

… at which point they would say, “Oh, it’s no problem. Let’s move…” However, my apologizing for having to move infers that I had a choice. Apologizing makes it seem that I regret I am who I am.

I’m trying to learn to say, “I need to move to that wall over there for balance reasons. Let’s move over there and continue our conversation?

… and their response would be, “Sure!

I was in a super crowded common area once in which a colleague was trying to talk to me about something important. Not only could I not hear her, my balance was REALLY off and I stood there wobbling like a buoy. There were no walls available, and I was really starting to feel ill. I said, “I am having difficulty in this listening environment. Let me follow up with an email because what you are saying is really important to me“. They were pleased to do so and I think grateful enough that I cared to communicate WELL with them. I had to bite my tongue to keep from saying, “I’m really sorry about this…” I had nothing to feel sorry about so an apology would only have infused my confidence with negativity.

Yes, But FATIGUE is just EMBARRASSING

What if your (seemingly) undue burden on others is simply that you cannot keep up? Perhaps you need a mid-day nap to finish the day strong. Yorkston et al., (2010) found that differently-abled individuals USUALLY have accompanying pain, fatigue, or BOTH. We tend to want to apologize for this. We shouldn’t.

I have a friend with chronic (and sometimes debilitating) ankle pain. Mid-day she goes to her office and puts her feet up. If she has to go to a meeting, she unapologetically claims an additional chair so that she can rest her feet. I walked into a meeting once and saw she had her feet up on an adjacent chair. Someone walked by and said, “Are you saving that for someone?” She smiled, pointed to her feet, and said, “No. Bad ankles!” The person didn’t question her. They didn’t shoot her a pitying look. They also didn’t steal her footrest. It was a smooth and succinct explanation for her claiming an additional chair.

Several weeks later I ran into her and talked to her about what I observed. She said, “I use to apologize for having to put my feet up. But then I thought, ‘WHY am I APOLOGIZING?’ I knew that only made ME feel badly. I decided then and there to stop being sorry for having tired feet“.

If I’m at work during a meal time and the weather is nice, I often go out to my car. I load my dog up, crank the air or heat (depending on the season), turn my cochlear implant and hearing aid off, and eat my meal in the quiet. Understanding my propensity for hearing fatigue, means I take time to unplug when needed. I need to recharge. I’m not anti-social (ok… well, not VERY) and I’m perfectly capable of going to the staff lounge or faculty dining room if I want to do so. Taking a mid-day recharge in the quiet enables me to complete my day STRONG… and unapologetic. Isn’t that what independence is about?

My iPhone may hold a charge longer than I do, but I take responsibility for recharging my own battery. Do what you need to do to recharge.

Need a nap? Take one.

Need some tylenol and a twenty minute break? Take them.

Need a “mental health day”? Take it.

Need a vacation? Take one.

Need a coffee break? Take it.

… and don’t apologize.

Denise Portis

© 2016 Personal Hearing Loss Journal

Nosek, M. A., Hughes, R. B., Swedlund, N., Taylor, H. B., & Swank, B. (2003). Self-esttem and women with disabilities. Social Science and Medicine, 56(8), 1737-1747.

Putnam, M., Geenen, S., Powers, L., Saxton, M., Finney, S., & Dautel, P. (2003). Health and Wellness: People with Disabilities Discuss Barriers and Facilitators to Well Being. Journal Of Rehabilitation69(1), 37.

Russell, D., Turner, R. J., & Joiner, T. E. (2009). Physical disability and suicidal ideation: a community-based study of risk/protective factors for suicidal thoughts. Suicide & Life-Threatening Behavior39(4), 440-451. doi:10.1521/suli.2009.39.4.440

Wright, Beatrice A. , (1983). Physical disability – a psychosocial approach (2nd ed.). , (pp. 116-156). New York, NY, US: HarperCollins Publishers

 

Yorkston, K. M., Johnson, K., Boesflug, E., Skala, J., & Amtmann, D. (2010). Communicating about the experience of pain and fatigue in disability. Quality Of Life Research: An International Journal Of Quality Of Life Aspects Of Treatment, Care And Rehabilitation19(2), 243-251. doi:10.1007/s11136-009-9572-1

 

 

The Last Straw

last straw

The Last Straw (that broke the camel’s back): The final, additional, small burden that makes the entirety of one’s difficulties unbearable.

Isn’t it interesting that there are so many idioms and colloquial expressions that mean “I’m done”?

The straw that broke the camel’s back (1816)

The last feather breaks the horses back (1829)

The final straw

Hitting a brick wall

Hanging up one’s gloves

The final stroke

I’m sure there are others. I’ve had a heck of a month. No worries – I actually thrive under (some) pressure. However, once in a while each one of us is simply not going to be able to take ONE MORE THING. That ONE MORE THING is often inconsequential and “small” in the grand scheme of things. Perhaps that is why we are so frustrated for breaking under what seems like a “small” thing.

This morning I was stepping off the porch when a “throw your head back to sneeze” came out of nowhere. Just. Like. That. I was horizontal with a teeny, tiny bit of remaining tunnel vision. My ears were roaring. I was nauseous. I had two very concerned service dogs in my face.

IMG_2781

Do you know I sat there and CRIED? I use to cry over everything. I mean, every, little thing! Happy, sad, angry, or confused, I’d unload some stress by crying my eyes out. These days I rarely cry. If I’m crying now, something is seriously wrong, or I have no reserves left and I’m “just done“.

It only lasted a minute or two. With retired neighbors on both sides of me, I can’t sit on the ground wailing very long before I garner some unwanted attention. I chanted to myself, “Suck it up, buttercup!” and struggled back to my feet. I’m sporting a few new bruises, and my pride? Well heck. My pride wasn’t hurt at ALL. When you have Meniere’s disease, pride isn’t crushed in falling, for one falls a lot. Pride is when you KEEP yourself from falling <big grin>

I felt so much better and finished watering the hanging baskets and flowers before making my way back inside. I likely over-analyze things too much. When psychology is your main squeeze, you tend to analyze everything. I took a few minutes to think about why falling on my face and experiencing a short bout of vertigo set me off. I determined it was “the last straw“. Have you ever felt that way when burdened with one more “little” thing?

It is very normal to have days like that. We all have stress. Stress can be good – and bad. Do not confuse stress with burnout. How do you know if you are becoming burnt out? According to the Help Guide organization (2016),

You may be on the road to burnout if:

  • Every day is a bad day.
  • Caring about your work or home life seems like a total waste of energy.
  • You’re exhausted all the time.
  • The majority of your day is spent on tasks you find either mind-numbingly dull or overwhelming.
  • You feel like nothing you do makes a difference or is appreciated.

(para. 6).

I love this chart (for I am a “chart” kind of person). I think it does a terrific job explaining the difference between stress and burnout:

Stress vs. Burnout
Stress
Burnout
Characterized by overengagement Characterized by disengagement
Emotions are overreactive Emotions are blunted
Produces urgency and hyperactivity Produces helplessness and hopelessness
Loss of energy Loss of motivation, ideals, and hope
Leads to anxiety disorders Leads to detachment and depression
Primary damage is physical Primary damage is emotional
May kill you prematurely May make life seem not worth living
Source: Stress and Burnout in Ministry

As you can see, both stress and burnout can be dangerous. Short-term stress, and at times – chronic stress, are a normal part of life. The “last straw” can actually be a good thing if it means you do something to alleviate some stress.

I cried. I hugged my dogs. I over-analyzed to my heart’s content.

However, the “last straw” can also be a prerequisite to something far more dangerous.

So what do you do when you feel your knees buckle and your back breaking? Well the first step in successfully recovering from collapsed camel syndrome is recognition of the problem or problems. Take some time to evaluate where you are at in your life. Are you over-extended? If so, what can be cut out? Start working on de-stressing. What can you take off the back of your camel?

Are you getting enough rest and taking care of yourself by eating right, getting some fresh air and sunshine, and laughing out loud occasionally? If not, make it a priority to do those things. They can strengthen “your back“.

The Help Guide organization explains how we can unload some of the burden on our camel:

Burnout prevention tips

  • Start the day with a relaxing ritual. Rather than jumping out of bed as soon as you wake up, spend at least fifteen minutes meditating, writing in your journal, doing gentle stretches, or reading something that inspires you.
  • Adopt healthy eating, exercising, and sleeping habits. When you eat right, engage in regular physical activity, and get plenty of rest, you have the energy and resilience to deal with life’s hassles and demands.
  • Set boundaries. Don’t overextend yourself. Learn how to say “no” to requests on your time. If you find this difficult, remind yourself that saying “no” allows you to say “yes” to the things that you truly want to do.
  • Take a daily break from technology. Set a time each day when you completely disconnect. Put away your laptop, turn off your phone, and stop checking email.
  • Nourish your creative side. Creativity is a powerful antidote to burnout. Try something new, start a fun project, or resume a favorite hobby. Choose activities that have nothing to do with work.
  • Learn how to manage stress. When you’re on the road to burnout, you may feel helpless. But you have a lot more control over stress than you may think.

(Help Guide.Org, 2016, para. 23).

Finally, acknowledge how incredibly resilient camels are! In Arab cultures, the camel symbolizes patience, tolerance, and endurance. Yes, at times you will need to ask for (and hopefully receive) help. This is a terrific article on finding help: (Where to Begin: Finding Help During Chronic Illness).

camel2

Denise Portis

© 2016 Personal Hearing Loss Journal

Help Guide.Org (2016). Preventing burnout: Signs, symptoms, causes, and coping strategies. Retrieved May 26, 2016, from http://www.helpguide.org/articles/stress/preventing-burnout.htm