When Rules Don’t Apply to YOU

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*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

 

 

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Cowlicks and Compromise

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Cowlicks and Compromise

I have a cowlick. I remember the first time I noticed the little tuft of hair—likely no more than 20 hairs total, in my bangs. I was at my grandmother’s house who lived on the farm 1.5 miles west of our own farm. I was washing my hands at the sink, and could just barely see my face and head in the mirror above the sink.

<SIGH> “Lookit this hair! It won’t lay down! It points the wrong direction”.

My grandmother informed me that it was a cowlick. Astonished and more than a little bit worried, I gnawed on my lower lip as I contemplated this new information. Demanding to know the “when and where”, Grandma calmly informed that it happened when I was a baby. I remember thinking, “Who would let a cow lick their baby’s head?” Either Grandma was tired of my questions, or she could see that this greatly concerned me. “It’s like a blessing. Even the cows knew you had great potential. You can do ANYTHING!”

I know she thought she was encouraging me, and later it actually WAS the source of encouragement when I recalled her words. However, she likely would have cracked up if she’d known how often I struggled to wash the cow saliva off my head after that.

Dreams, Goals, and Aspirations

I was a lucky little kid. I grew up in a small town, surrounded by really good people and warm, supportive family members. I was always told that I was really going to be something one day… I was going to make a difference. Whether it was the school counselor assisting me with college applications, or individuals in my church, each time it was said I thought, “This cowlick is coming in handy!”

Obviously, I grew to realize the cowlick had nothing to do with my “can do” attitude, but that seed planted as a youngster, certainly added to my determination. I already had a hearing loss in my left ear as I headed off to college. I would have one more surgery during Christmas break of my Freshman year. I never considered my hearing loss an issue as I had perfect hearing in my right ear.

Compromise

I know that I am a little bit stubborn. It’s not just because I’ve been told that I am, I recognize that it is hard for me to compromise. I’ve learned to compromise, which has only helped my relationships and even my marriage. I think in the beginning I saw compromise as “caving”. Because I was raised to be a strong, independent woman, I didn’t see how compromise could be a valued characteristic. I think compromise is actually misunderstood a great deal; perhaps even, considered a weakness.

My favorite definition of compromise (because there are a lot of them out there depending on the context in which the word is used), is from Chen (2004), when “a person has to give up something less feasible and achievable in order to accomplish career goals and projects that are more practical and obtainable” (p. 17).

After losing the rest of my hearing (ages 25-30), and discovering that what I thought was a natural “clumsiness”, earning the nickname of “Accident Prone Portis”, was actually Meniere’s disease, I learned to compromise simply because I was forced to do so. I learned to use adaptive devices, technology, and even learned to ask for help. I learned that to be realistic, I needed to cross some things off my my “to do” list. There are some things I just cannot do. That’s ok. It doesn’t mean I’m giving up or “settling”. I do get tickled at folks sometimes when they email me to say, “You are so inspirational!”

I’m not.

Huffingpost Post did a terrific piece on this topic. “When we think about inspiration, what inspires us most are ordinary people who have done extraordinary things. We appreciate when someone has the ability and willingness to be selfless, creative, innovative, or just dares to be different” (Green, 2013, para. 1). I’m not this person. I have no more talent, will power—or even COWLICK POWER—than anyone else. I have really good days. I have really bad days. Just this last week I found myself doing a little “soul cleansing” in the shower (the only safe place to bawl my eyes when you have service dogs in the house who cue off your mood).

I was crying because I was mad. Mad, that I’m forced to change the way I do my make-up. (I know… right?). I’ve always thought my best “feature” was my big, brown eyes and dark eye lashes. When my Daddy finally allowed me to wear make-up I learned early on how to highlight what I thought was one of my best features. My husband told me when we were dating that he just loved my eyes and wrote poetry about my peepers.

With progressive illnesses, one discovers that it is just that.

Progressive.

It sucks. Between my poor balance, shaky hands, and neuropathy in my fingers, it is impossible for me to use eye make-up now. I’ve had to change—to compromise HOW to wear and apply make-up of any kind. This… THIS is what reduced me to tears for a solid week! Some of the folks who write me and tell me that I’m “inspirational” also say, “I find that I spend too much time feeling sorry for myself!” Y’all? I’m crying in the shower because I can’t wear eye make-up!

I’m not very hospitable, but one of the great parties I know how to give is a PITY PARTY. I think most people who live with special challenges and illnesses find that they spend an inordinate amount of time feeling sorry for themselves. One quickly learns not to whine out loud because others frown on that. Both God and my husband know that I’m a whiney-baby. Trust me – I get feeling sorry for yourself. If your “differently-abledness” has you feeling sorry for yourself, you aren’t alone.

Weiner, Graham, and Chandler (1982) did some fascinating research on pity, anger, and guilt. Anger and guilt are associated causes perceived as controllable, while uncontrollable causes of negative events trigger self-pity (Weiner, Graham, & Chandler, 1982). I didn’t choose any of the challenges I deal with on a daily basis. You likely didn’t “sign up for” the challenges you face as well! When things happen outside of our control, it is natural to have feelings of self-pity. Charmaz (1983) explains that the medical field tends to “… minimize the broader significance of the suffering experienced by debilitated, chronically ill adults. A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones” (p. 168).

All of us grew up with dreams and aspirations. Some of us read books about having one year goals, five year goals, and ten year goals… working hard to lay the groundwork to make sure the goals were attainable. Instead, life happens. You may feel as if your life has been de-railed as you struggle to stay on track on a journey you had all mapped out.

The key is to compromise – but not give up. You may have to change the way you do things. I threw away all my eye shadow and purchased a magnified mirror and set up a means to steady my hand so that I can at least wear mascara. Other compromises are more worthy of being called “growth”.

Finishing school through distance education instead of doing so through a brick-and-mortar institution.

Using a cane and service dog to avoid running into quite so many walls each and every day.

Asking a student to follow-up with an email because I cannot hear them over the “buzz of sound” after class, and the acknowledgment that if they speak loud enough for me to hear them, everyone will hear.

Letting someone with normal hearing take the minutes of a committee meeting, even though my desire is to take notes.

Sitting on my caboose during the music in church because I cannot stand when the words are on a screen with lights, movement, and flashes. (Remember the good ol’ days when we used hymnals?)

 

Asking a family member to chauffer me around if I have to be out after dark (oncoming headlights trigger vertigo).

Using a cutting board ALWAYS, since not being able to feel your fingertips is dangerous when wielding a sharp knife.

Asking my service dog to fetch clothes out of the dryer so that I can fold them, even though I occasionally have to wipe doggie drool off of clean, dry clothing.

The KICKER compromise that many of us have to learn as a result of our new normal?

Asking for help to do something when we once did it all by ourselves.

When Do You Choose Not to Compromise?

A tough lesson in living a differently-abled life, is learning how to compromise by your own volition and to accept your own reality, and learning when NOT to compromise for others. Having a long-term blog on disability issues, invisible illness and chronic conditions, I have received one type of letter more than any other.

“My _______ (family, spouse, friends, co-workers) want me to stop using ________ (a cane, walker, service dog, assistive listening devices, medication) because it _________ (embarrasses them, makes them uncomfortable, makes me look bad).”

I wish I could reach out and SMACK UP ‘SIDE the HEAD, the folks who are saying this to you. They don’t realize all the compromises you’ve already made in order to successfully navigate your life and accommodate your new normal. (That’s right… you’ve resorted to mascara ONLY).

My friends? Don’t ever compromise… on chosen means of compensating just to make someone else feel better about your challenges. That isn’t compromise. That’s caving to a bully. Compromising by doing something differently in order to continue DOING means you are in control. Buckling to the pressure of someone who doesn’t live what you are living, will only yield bitterness, brokenness, and an unhealthy dependence. Do we need to ask for help sometimes?

Yes.

However, having a means of independence and being asked to give it up to help someone else deal with your issues is detrimental to your mental health and relationships. There are plenty of people who care about me that I have learned to not “talk out loud” around. They misunderstand the reason I’m belly-aching and offer selfish advice.

“You get so mad when people interact with your service dog. Why don’t you stop using one and find some other means to cope with your disabilities?”

This from a peripheral family member who:

  1. Is never around for me to ask THEM for help because they are in absentia nor have any meaningful intersection in my life.
  2. Is able-bodied (though mean spirited)
  3. Hates dogs

If using a service dog has enabled you to be more independent, then:

  1. Be more careful of whom you belly-ache too. Contact a fellow SD partner or a trainer.
  2. Find a way for the “drive by petting” interactions to become a positive advocacy channel.
  3. Join some face-to-face or virtual support groups with individuals who mitigate their disabilities with the partnership of a service dog.

I was recently contacted by the wife of a guy I graduated high school with in 1984. He’s coming up on the BIG 5-0, and she was looking for pictures “from way back” that we had so that she could use them at his birthday party and celebration. I took out some old yearbooks and began flipping through them. My senior yearbook had some great pictures of “all those from the class of ‘84”. In one section, the class voted on and selected one male and one female for specific “categories”. I was selected as “friendliest” and also “most likely to succeed”. (Don’t get any grand ideas… my graduating class boasted of 22 students). I sat there a couple of minutes wondering…

“Am I successful?”

“Did I waste my cowlick?”  

What I find valuable is making a difference, even if in only in one person. I have good days and bad days, but ALL days are lived where I look for and try to make a difference in at least one. It’s an adopted attitude that has really helped me adjust to being a person with invisible disabilities.

never-worry-about-numbers-help-one-person-at-a-time-2

Denise Portis

2016 Personal Hearing Loss Journal

Charmaz, K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology Of Health & Illness, 5(2), 168-195. doi:10.1111/1467-9566.ep10491512

Chen, C. P. (2004). Positive compromise: A new perspective for Career Psychology. Australian Journal of Career Development. 13(2), 17-28.

Greene, R. K. (2013). What is the true meaning of inspiration? Retrieved February 1, 2016, from http://www.huffingtonpost.com/r-kay-green/giving-back_b_3298691.html

Weiner, B., Graham, S., & Chandler, C. (1982). Pity, anger, and guilt: An attributional analysis. Personality and Social Psychology Bulletin.  8(2), 226-232.

How the Church Can Welcome the Differently-Abled

My husband, Terry and I, standing outside our church on Easter 2015.
My husband, Terry and I, standing outside our church on Easter 2015.

After a great deal of thought and preparation, I decided to reach out and ask for help.

Ok. Really I’m BEGGING.

(Well that sounds sappy and depressing).

I’ll pay you MONEY. I’ll have your BABY. I’ll CLEAN your house. I’ll OWE YOU. I’ll toot YOUR HORN (but I warn you… I’m deaf). I’ll GIVE YOU PROPS. 

Hmmm. None of those are doing it for me.

I’m asking you to HELP. You CAN MAKE A DIFFERENCE.

Asking For Guest Authors

As a person of faith, and a person who is differently-abled, being able to attend my home church is important to me. My church does a lot of things right. My church could do some things better. I have learned to accept that some things are just HARD when you put everything that encapsulates ME in the place I have CHOSEN to worship.

However, I am a person with hearing loss, hearing again through the bionics of a cochlear implant. That’s pretty specific.

I am a person with Meniere’s disease, a balance disorder that the “experts” have not completely figured out yet. The triggers, symptoms, and treatments vary. How it affects me is very specific.

I have major depressive disorder. Many people do.

I have a service dog. Not everyone who is “differently-abled” has chosen to partner with one. You may have other assistive devices or options.

I know, however, that there are many, MANY people out there who struggle in their own PLACE of worship. There are people who struggle worshiping along side of the PEOPLE with whom they have chosen to worship. These people are different than “my church family people”. There are people out there who have passion for Purple. (Sorry… I got carried away with having a third point that started with P. Did I mention I also have OCD tendencies?)

I would like to ask for YOUR help. You see? I need your stories and your words. Together, the compilation of our experiences (I believe) can make a difference in our churches. I am launching an initiative that I hope will take MONTHS to complete. There is no hurry. The posts do not have to be consecutive.

You can write anonymously.

You can write unedited.

I need you. I believe those trying to improve accommodations and accessibility in places of worship need to hear your story. Would you be willing to participate?

Some ground rules:

1. Email me at denise.portis@gmail for suggestions as far as photographs, word count, etc.

– OR – Click this link: <ThIs HeRe LiNk>  (When you are a transplanted Southerner, it shows up even in your hyperlinks).

2. The story needs to be YOUR story. In other words, you live a life as a differently-abled person. Or, you LOVE a differently-abled person and because of your relationship have an important voice about this topic.

3. My assumption is the posts will trickle in over the course of months (maybe a year! I can HOPE!). I will tag them with “Churches and Disabilities”.

Do you have an invisible illness and struggle with accessibility, acceptance, and inclusion?

Are you differently-abled, and wish some minor (or major) changes could be made to make it easier for you to attend your church?

Do you have a mental illness or diagnosis that is misunderstood and has the kind of stigma that a church pretends doesn’t exist?

Do you long for support groups hosted by area churches for:

Grief Support

Addictions

disAbility Awareness

Parents of Differently-abled Children

“Single Again” Care

Why not consider writing about it?

It doesn’t matter if you have never written for a blog before. You don’t have to consider yourself a “writer”. Hearing Elmo needs YOUR STORIES. I truly believe it will make a difference.

Denise Portis

©2015 Personal Hearing Loss Journal

Accepting Help ≠ Dependence

This service dog took full advantage of a holiday vacation in Florida.
This service dog took full advantage of a holiday vacation in Florida.

My Christmas holiday was a blur. They can be that way sometimes. I flew to Florida with my husband to be with my parents for Christmas, but I had a TON of homework. Chloe, faithful service dog, at least got the opportunity to really chill out. When I got home, I headed to an academic residency for 4 days.

Even being super busy, I still learned a few things. I learned some things about myself, about other people, and about acceptance. I began to lose my hearing and balance at the age of 25. Now that I am 48-years-old, you would think I have learned all that one can learn after living with hearing loss and a vestibular disorder for 2+ decades!

Ungracious Acceptance

Acceptance of my life as it is, seems to be an ever-evolving concept. Sometimes I take things in stride. Progression of the toll my diagnoses have, a new “timber – down goes Denise – fall”, having to switch out cochlear implant batteries mid-conversation, taking the elevator instead of escalator or stairs, and having to wait for an empty handicap stall in public bathrooms so that my dog and I BOTH fit, is really second nature for me now.

But sometimes? Sometimes I am WITCHY about it. (Feel free to put another first letter there as it probably fits from time to time). Maybe it’s hormones? Perhaps it is a lack of sleep? It may be I just had an unpleasant encounter with someone who was condescending towards me when my being differently-abled became apparent. For whatever reason, at times when someone asks if they can assist I must look…

S c A r Y

I assume this because their eyes get big, they throw up their hands in an “I surrender!” pose, and they take two full steps back. I don’t MEAN to put off that vibe, but I know there are times I must do so. I work SO hard at being independent. I love the color purple, but that isn’t why I carry a bright purple cane. I love dogs, but that isn’t why my 24/7 partner is a service dog from Fidos For Freedom, Inc. I love dangly earrings, but I don’t wear “bling-bling” on my cochlear implant because I’m a drama queen.

(OK, OKAY! I’m a drama queen, but in THIS instance it is not why I have bling-bling on my cochlear implant! Yeesh!)

I do all of these things to be independent. I yearn for independence and inner strength. I forget sometimes that the latter is the result of a “thinker” and “feeler” in sync in the body of a person who is differently-abled. Part of it, I actually HAVE caught the exasperated looks on faces when I do ask for help with something. It can be fleeting, but it’s there. I’m deaf, not blind. (We can debate if differently-abled people are far too sensitive about this and see things that are not there later).

Yeah, so? Let’s Go!

While in Florida, amidst homework and research, I did insist on going out to eat every day. I did a little bit of shopping at a place we don’t have in Maryland. Bealls was a very cool place! We also do not have a Belk. So yup. I did a little shopping.

When we went out on the town to do these things, we had to borrow my parent’s car. It is a big ol’ SUV and Chloe had to sit in the back compartment. It gave her plenty of room to stretch out and seemed like a great option for four people plus one service dog. The problem was that my parent’s SUV sits very high. Chloe is 10+ years old. She is retiring in May of 2015 (unless she lets me know it needs to be before then). The first couple of times I gave the “Chloe… OUT” command, she jumped from the back, only to have her front legs collapse and do a hound face plant in the parking lot. The first time it happened, I gasped. The second time it happened, I’m pretty sure I yelled. OK, yeah. I don’t yell. I have a hearing loss. I SCREECH. Ask me to demonstrate sometime, but bring the ear plugs.

Because my husband, Terry, didn’t want to see what a third time would trigger, he suggested, “Let me lift her out of the back and set her on the ground!

I said, “Ok, but do it in a way you don’t embarrass her. Make it quick and don’t make a big deal about it.

Perhaps I should explain that I disagree with those who say that dogs don’t exhibit or feel some of the same things humans do. I have seen dogs excited. I have seen them pissed. I have seen dogs pouting (do I have some stories about my grand-dog, Pegasus, or what?). I have seen dogs embarrassed. Point & laugh and dogs will duck their heads in shame/embarrassment.

Chloe’s weight ranges from 59-62 pounds. Needless to say, we don’t carry her around. I wasn’t sure how she would respond to being lifted from the back and set on all fours on the pavement; nor, did I know how she would respond to being lifted up into the back of the SUV.

The first time we opted to lift the service hound out, I held my breath. Terry reached into the back, hooked his arms under her and locked his hands over her spine, and carefully picked her up and set her on all fours.

PUH.

I exhaled rather noisily, and watched as she wagged her tail and moved to heel position, looking up at me as if, “Yeah, so? Let’s go!

I was stunned. I had a treat in my hand to cajole her back into a good mood. Instead I went into the store as if nothing out of the ordinary had happened. I watched Chloe from the corner of my eye. (Ummm… explain to me how oval shaped things like eyeballs have corners?) I digress…

I fully expected Chloe to act, I don’t know… WEIRD for awhile. However, she took it all in stride. She needed the help, being rather fond of her own face, and didn’t even miss a step in going on about her job after accepting assistance.

Do you know where I’m going with this?

WHY???????

Why do we act so weird when we need help? Maybe it is just a little help.

… like picking up the dropped blue tooth device I spotted in a hallway that I could not bend to get, and didn’t want Chloe to destroy by enthusiastic fetching.

Maybe it was a lot of help.

… like helping me dislodge my wedged rolling briefcase from the elevator door as it was stuck solid. I struggled with my butt holding the door, cane braced, and dog freaking out as I tugged on a very STUCK wheel.

Sometimes? Sometimes, we just need a little help to continue doing our thing. We need a helping hand. We aren’t signing an I.O.U. If we truly want the world to be a kinder place, then why are we prickly when someone asks if they can help? By accepting help we are not sticking a “I’m WEAK” note on our forehead. We can accept help and still be independent. We aren’t waving all rights to an independent life should we accept help once in awhile. For most people, helping another is done so with no strings attached. They don’t even think twice about it. They may never think about it again, while WE sit there perseverating on it and making a huge deal about it. Why can’t we just say, “thank you!” and our attitude be, “Yeah, so? Let’s go!

PRIDE.

Pride can be a good thing. There are good types of pride, and crippling types of pride. Learn the difference. Learn to accept help. It doesn’t mean you are signing on to a life of dependence. It means that you are SMART. You know your limitations and are making wise choices to do what is best for YOU. Face plants on the pavement aren’t fun. All you will have for that type of stubbornness is a skinned chin. (Ask Chloe…)

Denise Portis

© 2015 Personal Hearing Loss Journal

 

 

 

Make a Difference

make a difference

My paternal grandmother passed away unexpectedly on March 28th. She was instrumental in my becoming, well – ME. I told her the FIRST time how important she was to me at Silver State Youth Camp in the Rocky Mountains when I was 13-years-old. I made it a point to tell her at least once a year, and to my knowledge never missed a year of telling her how important she was to me.

We have people we care about, and then there are usually a smaller group of people who influenced who you are. I’m convinced we do not have a whole lot of opportunities in life to invest ourselves THAT WAY in the life of another.

Searching for Significance

One of my favorite books is by Robert McGee. Searching for Significance is something all of us long for I believe. Something it took me years to learn, however, is that “significant” is what you deem important. What I think is significant and life-changing, may not mean a hill of beans to you. And that’s OK. We can’t find significance by asking others how they measure that. Significant things are as unique as people are. This is why so many of us are invested in causes, hobbies, and community service. For US, these things add significance to our lives. We want to make a difference by being involved.

One of my favorite quotes is by Joseph Campbell. “Life has no meaning. Each of us has meaning and we bring it to life. It is a waste to be asking the question when you are the answer.”  I find this rather profound. WE bring meaning TO life.

Life is hard. Living with disabilities is hard. Living with adult children at home is hard (not really but I had to throw that in there). If I expect my life – with all it’s trials and successes, joys and sorrows, to provide meaning, I’ve missed the whole point of living.

Some folks think they are not in a position to make a difference. You don’t have to have money or advanced degrees to make a difference. Everyone has some kind of talent. I have friends whose disabilities are severe enough they are really home-bound. Yet they have made such a difference in my life through the short emails or messages they send me – right when I need encouragement the most. I have had people I don’t even know make a difference.

I will never forget the homeless man I met at the inner harbor in Baltimore. My “quick diagnosis” was schizophrenia. He was a beggar, entertainer, and to many a nuisance. He stopped me to ask about my service dog. He asked if he could have her and promised to take good care of her. When I explained what she does for me I actually got choked up. He listened attentively and then squatted down and held her head for a moment. He muttered something to her and I couldn’t make it out. (It hadn’t registered with him that I said I was late-deafened). He looked up and said a little louder, “I was jus’ tellin’ her to be the best dog for you she could be because life is short. She makes a difference so she has to count now, not tomorrow”. I was like, “Woah.” That has stuck to me like super glue for 6 years now. It has inspired me to make a difference TODAY. We aren’t promised tomorrow to make a difference. Count now.

Just Remember to TELL THEM

If someone else does something that makes a difference to you, won’t you tell them so? It doesn’t have to be a huge announcement. It doesn’t have to be a flamboyant gesture. No need for helium balloons and streamers. Just tell them, “You made a difference”.

My grandparents... together again.
My grandparents… together again.

We need to let others know when they influence us or inspire us. Who am I because of my grandmother? Those who knew us both tell me I get my stubbornness from her. They also tell me my love of dogs, singing voice, hair color, and ability to confront people with courage all come from her. The reality is that even when my life began to change as the result of Meniere’s disease and deafness, her letters made a difference. She is a writer, and encourager, a cheerleader, an advocate, a teacher, and a legacy-builder. When she wrote, a common theme included near constant reminders that *I* could still make a difference. She encouraged me to be an advocate.

I am.

She encouraged me to write.

I do.

She told me I should not be afraid to speak and present to others.

I’m not and I do.

Her legacy of “making a difference” spans generations.

Very likely I do not know you personally. However, I do know that you *POINTS THROUGH YOUR COMPUTER SCREEN* can make a difference. It doesn’t have to be big. Betcha it is big to someone else though! That is what making a difference is all about.

Denise Portis

© 2014 Personal Hearing Loss Journal

Advocacy ≠ It’s All About Me

DSC03285

Yup. Like most of the Atlantic coastline, we’ve been getting the snow. Enough snow that warranted a “whoops Denise” accident with two emergency room visits to follow. But hey… that’s OLD NEWS now so I digress…

Last week, most schools closed both Thursday and Friday. Since my entire family works at a school, that meant we were all home.

Together.

In the same house.

By Friday afternoon I was BEGGING my husband to get me down the hill and out of the neighborhood. We unburied the car, unblocked our space that the snow crews had “accidentally” blocked off with huge mounds of snow, warmed the car up for ten minutes, and escaped.

It was also Valentine’s Day. My husband knows better than to get me chocolate or flowers. I love cards. I love to eat out. (Something to do with not having to fix it or clean it up?) So we went on a “date”. I was thrilled. Not only had I escaped the house but now I was going out to eat a late lunch for Valentine’s Day.

I’ll admit it. I wasn’t thinking about “pottying my service dog” at home where I had cleared out a space in the grass so the dogs could easily go. My mind was on one thing. Escape. So by the time we arrived at the restaurant, it took seconds for me to realize my mistake. I had forgotten that snow plows pile up the snow on the mulch, grassy areas, or right on the other side of the sidewalks so that the walkway is clear. You can only get to the grass if you climb up a huge man-made snow drift! We got out of the car and my husband looked around.

“Gosh. Can you believe it? What are people with service dogs suppose to do?” he said with heartfelt exasperation.

I looked at him quizzically for a second or two before responding. “Ummm. It’s not THEIR fault that I didn’t take care of pottying MY service dog before I left home”. 

I was so proud of myself. I practically beamed from the inside out. There may have been a faint glow coming out of my ears and nostrils. Yup. I’m pretty sure I was beaming.

My Problem Isn’t THEIR Problem

You see? The only person who is responsible for making sure my service dog’s needs are taken care of are ME. There was a time when I advocated very poorly. Do you know I never once improved my situation by poorly advocating? Poor advocacy is accomplished when your attitude is wrong. These wrong attitudes can include a critical spirit, self-pity, self-righteousness, indignation, pessimism, and a persecution complex.

Sometimes people with invisible illness or disability advocate poorly because we are fed up. Maybe you have faced very real discrimination. This can make us feel defensive. Worse? It can make us go on the OFFENSIVE. However, advocacy is similar to a trial. We plead our case, provide evidence, and attempt swaying another to do the right thing and perhaps facilitate change, follow the law, understand our predicament, or simply raise awareness.

It was not the responsibility of Outback Steakhouse to make sure my service dog had an easily accessible place to potty before entering the establishment. Had I gone in and demanded accommodation for something like that I wouldn’t have gotten very far. I did let them know that the crew they hired to plow their parking lot had piled a bunch of snow up in a handicapped space, “… and what was someone to do who wanted to eat out and had mobility issues, needing the space?” (I’ve noticed people listen to a person with disability advocating on behalf of another with disability).

Unfortunately, this doesn’t mean that you never have to…

lock and load” (Ok. That’s is a bit much, yes?)

gird up your loins” (Umm. Creepy much?)

put up your dukes” (*rolls eyes* What is this? A boxing match?)

FIGHT FAIR. That’s right. Sometimes you may have to fight to make sure your rights as a person with disability or invisible illness are upheld. But remember, this is about equality, not superiority. In the end, you want to sway others to your way of thinking or to understand the law. This isn’t about special privileges, recognition, or “it’s all about me”. That has never defined advocacy.

Denise Portis

© 2014 Personal Hearing Loss Journal

Monkey See, Monkey Do

I've always been an "expressive mime" and mirror people's facial expressions!
I’ve always been an “expressive mime” and mirror people’s facial expressions!

My kids were the first to ever mention it to me. However, since that revelation a number of people have told me, “Denise? You mimic every facial expression I have!”  Some said so with exasperation, and some with amusement. My daughter, age approximately ten-years-old, interrupted herself describing something funny that happened in a class to exclaim, “Mom! You crack me up! You make the same faces I do when I talk!”

Sort of like “monkey see, monkey do” I suppose… but not because I was learning through observational learning or imitation. Instead, as a person with hearing loss, I carefully watched the facial expressions to better speech read and pick up more than I could by simply hearing pieces of words.

It’s different than being empathetic. I know because I’m one of those folks who will laugh with you and cry with you. Yup. Literal tears and equal sobs and hiccups. Don’t get me wrong! I’m sincere! I just get very emotionally involved in communicating and have been known to laugh, cry, or “blow my top” just in commiseration!

I “hear again” fairly well now. I’m bi-modal – meaning I have one cochlear implant, one hearing aid, but AIDED in both ears to better hear. Ideal environments are one-on-one in quiet places. I hear well with only some necessary clarification even in noisier environments. However, despite hearing better, I still have the habit of mirroring people’s emotions and facial expressions.

I learned ASL long before I lost my own hearing. I had some friends in college who were culturally deaf… and this motor-mouth wanted to talk to them. Most people who are late-deafened never learn ASL. (Why? They were born hearing and likely most of the people they know are verbal communicators). However, ASL is actually made up of three things: sign, facial expression, and body language.

So perhaps that is why I mirror facial expressions. More likely? My best guess is that people with hearing loss have a need to really focus, really TUNE IN when communicating. Sure, we speech read to a degree, but we watch people’s faces too. Are they smiling, scowling, surprised or crying? These facial expressions matched with what we CAN hear, help us to determine the overall content of what a person is communicating. So guess what? If you know someone with hearing loss, it can greatly benefit that person for your face to match your mouth.

Sarcasm is a Problem

How do I know this can be a problem? I have a sarcastic son. As a matter of fact, my daughter has been described as having a dry wit. My husband? KING OF SARCASM. It can be really hard to communicate if their face is saying one thing (or nothing at all…) and their mouths are saying something else. Even “hearing again” as well as I do I was taken aback by a conversation I had on the training floor at Fidos For Freedom recently.

Steve (name changed), a fellow client and new buddy of mine, came up to me in his scooter with this big signature smile on his face. “HEY! (What can I say… I’m exuberant!) How has your week been!?”

With huge smile and sporting numerous dimples he responded, “Hi, Denise. Hi Chloe. I had a really bad week!”

I paused a moment. Then a second moment went by. I was confused. In this big cavernous training room with numerous sounds competing with what was coming out of his mouth, his face did not match what I thought I heard.

“Ummmm.” (Yeah. I’m eloquent).

Thankfully, he took my pause as permission to elaborate. It only took another sentence or two for me to realize – yes. He HAD indeed had a bad week, but ever optimistic, positive-thinking young man that he is, wasn’t going to let that stop him from smiling and enjoying his training and friends at Fidos For Freedom.

Another example of mixed signals:

In class today a student rushed into class a few minutes late, causing me to skitter out of the way before I was knocked flat. Big smile on her face, she stopped with big eyes and eager expression to spout, “Crap. Crap, crap, crap. I could kill myself!”

Again, tempered with years of experience I intelligently responded…

“Ummmm.”

“We have a quiz today, don’t we? Crap! I forgot!”

Thankfully people do tend to continue, helping to CLEAR UP that initial confusion. It is a much tougher situation when you get mixed signals and then they pause waiting for a response. You know that terrifying look? Shoulders turned slightly towards you with eyebrows raised and expectant look? (When I see it the blood rushes right out of my face!) Then I have to ask for clarification, “Could you repeat that?”

Many times mirroring another’s expression can be very helpful. If they look concerned and you mirror that concern, it may clue them in you are taking something they are saying seriously – when perhaps it is NOT. I’ve had friends pat my shoulder and say, “Relax. I’m kidding”

Being willing to ask for clarification is key. People with hearing loss cannot be afraid to admit you did NOT get it. You don’t need to complain. You don’t need to “ticket” repeat offenders. No need to point and loudly exclaim, “Everyone look at this person! They are expressively dyslexic!” (Ok, yeah, I made that phrase up).

Instead, just say, “Oh wow. You know what? I didn’t hear that right because your expression doesn’t match what I thought I heard”. That’s enough! In the end… you just may assist helping others become more expressive, genuine communicators. Hey… we can dream, right?

Denise Portis

© 2013 Personal Hearing Loss Journal