More Vulnerable than I Thought – Stronger than I Imagined

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

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

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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

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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

 

 

Let Sleeping Dogs Lie

My sweet Sheprador
My sweet Sheprador

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

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

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

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

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

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

Denise Portis

© 2016 Personal Hearing Loss Journal