By Association…

Tags

, , , , , ,

by association

You’re gonna think this is off topic. Hang with me, I promise this is a “typical Hearing Elmo” post.

I’m turning in my “Christian” card. 

I’ve been so aggravated with “Christians” over the past month, that I decided to shred my “card”. Being a “card carrying Christian” doesn’t mean anything anyway.

It matters how you live and Who you put your faith in… at least that is what I believe. Sometimes I get extremely annoyed on FaceBook. But…

I stay because the disABILITY community is alive and well, thriving and connecting on FaceBook. In the last month, however, I have seen folks post a couple of things in the name of God, that made me shred my card. Carrying a card doesn’t mean squat. I’m going to live what I believe and ignore some folks that choose to make the “real deal” look bad.

1. The suicide/death of Robin Williams

Some things I actually saw posted:

“Shame on Robin Williams for causing such grief and forcing his family to shoulder this for the rest of their lives. No way is he in Heaven”.

“A Christian cannot commit suicide. It keeps them from Heaven. Guess we know where Robin Williams is”

“It’s is so sad he (Robin Williams) didn’t get help for his depression. Had he known God, that would have helped”

“Disgusts me! Suck it up and be a man. Seriously, the coward’s way out”.

All these from folks who regularly post things making it clear their faith-based beliefs. Yet this erases all of that in my opinion. They only show their stupidity (I mean… try doing some real research on what clinical depression is, would ya?) and judgmental attitudes. Yeah. That will win others to Christ.

2. The ALS Ice Bucket Challenge

Some people who have made it clear what “card” they carry when it comes to personal beliefs and faith, reported that they could not accept the challenge because ALS research conducts stem-cell research. It doesn’t seem to matter that stem-cells can be harvested from a number of different procedures – only one that is from embryos. Couples with frozen embryos can:

  • simply discard the embryos
  • can store the embryos indefinitely at their own expense
  • can give the embryos to other infertile couples. (More information about that option is available through the RESOLVE: The National Infertility Association)
  • can donate the embryos to general research or stem cell research (CIRM, 2014).

Stem cells can also come from adults, however, and umbilical cords of newborns. Scientists and researchers have even learned to induce pluripotent stem cells – alter adult stem cells to have the properties of embryonic stem cells (Mayo, 2014). But wait, let me guess. You have issues with genetic research, too?

Let’s say stem cell research goes against your personal beliefs and world views. So you do not support infertile couples seeking help in order to conceive? So if stem cell research is done and embryos are used… and a cure or viable treatment is found for diagnosis such as: spinal cord injuries, type 1 diabetes, Parkinson’s disease, Alzheimer’s disease, heart disease, stroke, burns, cancer, osteoarthritis, and ALS (Mayo, 2014), you would not participate in this treatment or cure if diagnosed with one of these, right? Or, if someone you love is diagnosed with one of these debilitating diseases you will let them suffer? Do you know how many relatives I have that would not be alive if not for diabetes/insulin research?

OKAY!

Ok.

ok… I will calm down. After all, you are allowed your opinions and biases. This IS (still) a free country. But I don’t have to buy into that, nor drink your proffered kool-aid. I read some posts about rejecting the ALS Ice Bucket challenge that made me weep.

I mean I cried buckets (though not ice buckets).

Because people who have this disease or love someone who does may have seen your post. And heard your excuses.

Hey. Most of us have limited incomes and must choose what we do with our discretionary monies. There are only a handful of places I give to each year because they are causes and non-profits that I am passionate and convicted about. If you choose not to accept the “challenge” that is your choice. Maybe say, “sorry, I give to other foundations/charities but I salute those of you who are giving to ALS”. Just please don’t make excuses about why you aren’t going to give to the ALS foundation and say it is because of the “card” you carry. Worse… explain that you are going to give your donation directly to a patient with ALS instead of the evil foundation. Because that person wants your money and not a cure.

Who Am I – by Association?

So all of this has made me think. (Can ya tell? LOL) Some of my associations I am very proud of and gain physical, emotional, psychological, and spiritual benefit from participating. Others make me keep my distance though. I may even shred my “card”. It doesn’t change who I am – merely my associations. I am a person of faith, but I want to be transparent, compassionate, and a friend who makes a difference.

What are your associations? (Other than those that are faith-based)

I am associated with groups who have bionic hearing. I have a cochlear implant. Sometimes we disagree on “best company” or hearing health strategies, but we don’t judge or behave holier-than-thou. We agree to disagree when needed.

I am associated with groups with vestibular disorders. There are SO MANY different specific diagnosis that are vestibular disorders. Meniere’s disease is a fickle pickle. Few have exactly the same symptoms and triggers, and what program works for one may not do anything for another. However, we work hard to accept that “whatever works” for each sufferer.

I am associated with groups who advocate for the rights of those with service animals. Fidos For Freedom, Inc., radically changed the course of my life. I don’t agree with all training practices and at times am rubbed wrong by certain personalities. However, I proudly wear the mantle of service dog “mom”.

Yet at some point in my life I had to dis-associate with the culturally Deaf. My reasons are a long story, but it is my story and I shoulder the responsibility of that choice.

I chose to dis-associate with my undergrad alumni. Again a long story, but one I stand by.

I chose to dis-associate with people who don’t like Greek yogurt. They can’t be trusted.

These are my choices, and YES. I “get” that you have the choice to “dis” Robin Williams, individuals who took their own life, and depressed people who have lost hope. I respect your choice. Doesn’t mean I can and will choose to associate with you. I understand that your conscious will not let you give (one time or regularly) or support (by posting a video and challenging others) the ALS Foundation. But if you choose to voice that opinion and choice in such a way that it harms others, I don’t have to associate with you.

There are numerous organizations in our great country that I do NOT support because of ethical concerns and personal choice. But you will never see me posting things in a public venue something that may cause harm to someone else – even peripherally. I have the freedom to express my opinion one-on-one to close friends and my husband. Believe me… I do this regularly when my ability to cope with those who hate Greek yogurt overwhelms me.

Y’all? Go be nice to others. :-)

Denise Portis

© 2014 Personal Hearing Loss Journal

CIRM. (2014). Myths and misconceptions about stem cell research. Retrieved September 2, 2014, from http://www.cirm.ca.gov/our-progress/myths-and-misconceptions-about-stem-cell-research

Mayo Clinic. (2014). Stem cells: What they are and what they do. Retrieved September 2, 2014, from http://www.mayoclinic.org/tests-procedures/stem-cell-transplant/in-depth/stem-cells/art-20048117

 

 

Watch Me

Tags

, , , ,

Chloe and Lewis

Want to get on my last nerve? Enjoy listening to me Sputter as I desperately try to spit out a response? Want to see this kitty’s claws?

this puppy’s teeth?

this chicky’s – erm – umm – BEAK?

Then tell me I can’t do something. Heck, I’m not even the “first born” in my family! The birth order norm fairy forgot to send the memo when I was born – “2 of 4″. I can be a stubborn behind. Sometimes this is very, very BAD. But sometimes? Sometimes this is very, very GOOD.

Do you know that I credit my “can do” attitude to my hound dog? The fact that I can say, “Watch me!” can be attributed to the fact that I am partnered with an assistance dog from Fidos For Freedom, Inc.

Yes. Perhaps I would have found my courage without her. I may have discovered I am resilient on my own. I may have responded to a “Hey! You can’t do that!” with the response of “Oh yeah? WATCH ME!” by simply growing and maturing. However, I can exactly pin point the moment in time when I grew self-esteem muscles.

Chloe jumped into my bubble bath with me when my phone rang. Her hearing alert was so ingrained, she was oblivious to the water and naked partner.

Chloe jumped into my bubble bath with me when my phone rang. Her hearing alert was so ingrained, she was oblivious to the water and naked partner.

I was matched with Chloe in May of 2007. Shortly after that, Chloe came home to live with me and to do what she’d been trained to do. Alert me to sounds I could not hear. (Eventually she received additional training and skills to help me with my balance). I use to really enjoy bubble baths. This was before numerous concussions and worsening Meniere’s disease made the risk of drowning to real. Chloe was parked on the bath mat while I enjoyed that lazy bubble bath. I can’t tell you how startled I was to suddenly find my dog IN the bathtub with me and licking my face. My husband popped his head in the door and said, “Your phone was ring… ing. Ummm. Why is Chloe in the bathtub with you?

From that moment on, I knew I’d never miss a phone call.

… or alarm clock, or not be able to pick up something I’d dropped, or climb stairs safely, or know if someone was behind me in a store, and friends? The list goes on…

Watch Me

One of the early commands I learned was “Chloe – WATCH me“. Because I talk to my dog and would often say, “Chloe – look-it that squirrel, – or – look-it that bunny”, I learned NOT to say, “Chloe LOOK”. It would make her eagerly look around at whatever CRITTER I had seen before her! However, if I say, “WATCH me“, she looks right at me. She may cock her head and obviously listen for a command; much more than just meeting my brown eyes. However, she knows that “WATCH me” means “make eye contact – pay attention”.

Chloe actually tells me “WATCH me” as well. Chloe does it with her ears and head. When her head swings in a specific direction and her ears go up, I :  1) look at her and pin point where she is looking/listening, 2) turn to look myself. It may mean I need to step out of the way of something or someone.

Not LITERALLY

“WATCH me” doesn’t always mean literally, however. I was so cracked up at a meeting I attended recently. I was seated next to a person with low vision. We were in between speakers and were visiting while we waited for the next session to start. About 10 yards away, I noticed this man and lady plug up a power strip and run an extension cord over to their row in the auditorium. I interrupted my friend and said, “Hang on – they can’t do that! I’ll be right back. Watch me!

I stood up and walked over to the couple now fussin’ with how the cord should lay across the aisle. I put Chloe in a sit/stay and said, “Oh I’m sorry. You can’t put that cord there as there are a bunch of us in this area who cannot navigate safely with it stretched across the aisle“. They looked at me with a startled eyes and then around me to the section I was sitting in. I could tell by the dawning comprehension on their faces, that they spotted the service dogs, walkers, scooters, and canes.

Ooops. Sorry about that!” and they worked together to pick it up and roll it back into a nice handful of cords and plugs.

I casually walked back to my group and my friend said, “I saw that! Fist bump!” and she held up her fist for a “you go girl” moment.

Then it hit me. When I walked away I had told my friend with low vision, “WATCH me“. When I returned she said, “I saw that!” I started laughing. Not the kind of southern girl lady-like giggle. Oh no. I was hee-hawing. I managed to snicker out loud in between SNORTS what I had said – and what she had said. I nearly laughed myself into the floor. Yup. The kind of laugh where I had tears of mirth running down my cheeks and very unladylike hiccoughs to boot. My friend was laughing just as hard. She said, “We’re a pair, aren’t we?

You “see”, my friend? You don’t have to have 20/20 vision to be able to WATCH ME. You can pay attention with your eyes, your ears, or your hands. You can pay attention with your heart. You can pay attention – by PAYING ATTENTION.

It’s a focus.

It’s an attitude.

One of my favorite quotes (in the opening picture above) is by C.S. Lewis: “Every disability conceals a vocation, if only we can find it, which will turn the necessity to glorious gain”.

I recently had someone take me to task for self-identifying as a person with disABILITY. She argued that I was basically admitting I was unable to do something. I thought, “Well how wrong is THAT?”

Every person I know who lives with disability is actually someone who has learned how to do something IN SPITE OF challenges. You find a new way to do something. You learn how to do things safely even though it may not be the way a task is done by most folks. Perhaps you have assistance because of a device, service dog, or have simply learned to ask for help.

Yesterday while on campus, I needed to drop something off at the Disability Support Services office. My balance was “good” yesterday, so I exited a door that actually opened into a courtyard that had stairs bordering the perimeter. I felt confident to go up the 20 some odd stairs with Chloe. When I reached the top, an employee was standing there with big eyes, having seen me take a slow but steady climb to the top.

Hey!” I said cheerfully, and stepped around her. I looked up and was startled by a mass of people coming out of the gymnasium towards me on a very narrow sidewalk. I looked for an alternative path and spotted a way around through the mulch and picnic area.

Sensing what I was about to do, the lady beside me said, “Maybe you should wait“. I know she meant well. I felt no criticism, nor did I feel she was talking down to me. But… I was in a hurry, and I was having a good balance day. I had my service dog right beside me.

So I responded, “Oh, I’m ‘good’, no worries…” and proceeded to carefully pick my way around tree roots, pine cones, mulch and twigs. I didn’t retort, “WATCH me“, but if one could interpret the courage and attitude from my squared shoulders and confident stride, you would have “read that” in my departure.

Chloe and Fidos For Freedom were the “shot in the arm” I needed to become confident and independent. You may have found your own way to adapt. Having a disability does NOT mean you cannot do something. As a matter of fact, chances are if you tell someone who is differently-abled they cannot do something, you may discover by the set of their jaw, the determined look, and confident square of their shoulders that they most certainly CAN. Their body language screams,

WATCH me“.

Denise Portis

© 2014 Personal Hearing Loss Journal

Recurring Dreams… Life Goes On

Tags

, , ,

1531649_10202502950992038_1907354485_o

One of my favorite chapters in “Introduction to Psychology” is the one where we study dreams, sleep, and the subconscious mind. Everyone dreams – though you may not always remember your dreams. If you have furry family members, you’ve learned that even pets dream. I’ve seen evidence of REM sleep in dogs, cats, hamsters, even cows!

Very likely, if you do remember a dream it is because it was a bad one. Or, you may remember it because it is a recurring dream. Interpreting dreams is tricky. Yes, yes, I know! Abraham, Jacob, Joseph, Daniel, and numerous others in the Bible made it look easy. It really is NOT that easy. If you have dreams that are bothering you, or have recurring dreams, don’t be afraid to talk about them with someone you trust. It can be a friend, counselor, or peer with a supportive role in your life. However, just remember, YOU are the expert on your dreams… they are YOUR dreams. Tartakovsky (2011) explains that there are indeed some universal symbols in dreams, however what those symbols mean to the DREAMER is what really matters. Someone else analyzing and interpreting the dream on your behalf is very likely inaccurate. In spite of knowing WE are the expert  when it comes to our dreams, recurring dreams usually end up making us “talk out loud” about what we are dreaming. Because you dream this dream OFTEN, you start thinking about it when you are awake. Most dream analysis experts agree that “recurring dreams reflect feelings and awareness that have not been successfully resolved in our waking lives” (Psychology Campus, 2004-2008, para. 4).

My Recurring Dream Had a Specific Trigger

I (like many of you) have a recurring dream and it always follows the same conscious scenario. Every time I fall and actually sustain an injury, I can guarantee I will have the same dream. I actually call it my “falling dream“.

Yes.

I do understand that by anticipating the dream, I am likely precipitating the dream itself. I get that. Now before you jump to conclusions, my dream isn’t about falling. Heck, I do enough of that in my conscious activity! I certainly don’t need it to happen in my subconscious mind – grin!

After a fall, I have a dream where I’m walking in a busy location with people everywhere, and all of sudden I’m frozen and cannot continue walking. Perhaps even more telling, my service dog, Chloe, is also frozen mid-step. Everyone around us continues to walk, talk, and move. Sometimes in the crowd I recognize people from my family, work, church, etc. Most of the time the faces are strangers, however. I can “hear” myself in the dream screaming (of course my mouth is not moving), “Help me! I can’t move! I can’t speak! Why aren’t you helping me? Can’t you see I’m frozen?”

So… yeah.  Please have fun with that and if you feel like commenting or emailing me what YOU think this probably means, go for it! I’m always interested in other’s opinions. Because the dream always follows a significant “Denise fall down – go boom” moment, I think I have this one figured out. I’ve had this same dream for over 12 years. The only thing that has changed in the dream is the addition of Chloe, my service dog. I was matched to Chloe in 2007. Goes to show the significant impact a service dog has on their person that she ended up in a recurring dream. <BIG GRIN>. Another change in the dream occasionally happens… but I’ll get to that later! <wink>

I believe this dream “for me”, means that I recognize that my “new normal” has an affect on ME, but not so much others. All the feelings, fears, bruises, even shame, is something I deal with in being differently-abled. However, it isn’t something that impacts others. Ever want to scream at the world to stop a moment and acknowledge that…

DARN IT. I’m dealing with this! Don’t you see? 

or

DARN IT. I suck at this! Don’t you see? HELP!

Life goes on. That’s hard, isn’t it? Isn’t it frustrating when you are sucker punched with a personal crisis of some kind and life just goes on as usual for everyone else? Worse? Life goes on for YOU!?

You lose someone close to you and crap. Life goes on.

You receive a diagnosis that will change your life. This sucks but life goes on.

Someone you trusted betrays you. It hurts but life goes on.

A progressive illness progresses. You adapt and life goes on.

You are sick and tired of being sick and tired. Life goes on.

Simple Acknowledgement

Most folks who live with invisible disability or a chronic illness will tell you that it is hard for them to share with others when they are struggling. This may be because they always seem to be struggling and figure everyone around them is sick and tired of hearing about it. We don’t want to be labeled as a “bellyacher”. Maybe you only rant to someone close to you. Perhaps you write. Maybe you pray. You may have some type of “release” that allows you to vent.

Sometimes my frustrations get the best of me and I bellyache out loud. However, most of the time I keep it quiet or at most confide in a trusted friend who “gets it” on a level that others cannot. I have a friend with MS who once told me, “Denise? I always feel like crap. I can’t respond to ‘How are you today?‘ with, ‘actually I feel like crap!‘. So I respond the way all of us respond, ‘I feel great, how are you today?‘. I can’t respond truthfully. People who do not have MS cannot understand what it is like to wake up tired, go to bed tired, and hurt all over each and every day. So I lie and say, ‘I’m great! How are you?‘ I don’t think this makes me a liar. This is how I convince myself I’m OK. I try to convince others I am.” 

You know? I don’t know very many people who live with significant challenges who want someone who will allow them to dump for hours each day. Griping for hours on end does not help physically, emotionally, or mentally. Most of us learn early on that perseverating on the negative only provides the ingredients for a significant meltdown. It is HUGE, however, to know we have a trusted peep or two that we can say, “Today is a bad day, but I’m going to be OK“.

Most of us simply long for a quick acknowledgment. Perhaps a short hug. I have a friend who has a seizure disorder and lives with chronic fatigue and pain whom I see about once a week. Like most folks, when we greet we say, “How are you doing?” I know this person well enough that both of us can say (on a day things aren’t going so well), “I’m not doing that great today, but things can only get better“. Or, “I’m not doing that great but I’m OK. Tomorrow will be better“. A pat on the shoulder and an understanding hug goes a long way. My friend doesn’t want me to grab her hand, drag her over to the side, and make a big production out of her “horrible, no good day”. If I say, “I’m thinking about ya“, or “How can I pray for you today?“, that is enough. You can see some of the tension roll off their shoulders. Simply acknowledging another’s pain or distress is A BIG DEAL. Salovey, Brackett, and Mayer (2004) call this empathy or emotional intelligence, and one can grow their EQ (emotional intelligence) simply by learning to acknowledge someone else’s feelings. It doesn’t have to be time-consuming. As a matter of fact, here are some great tips that will grow your EQ and help someone else:

1. Remember – and follow up.

Did someone tell you that they were having a rough day? The next time you see them ask them how they are doing NOW. By simply remembering they were going through a tough time and you care enough to follow up is HUGE.

2. Send a card.

My life has dramatically changed in that most of my correspondence is electronic. I buy one book of stamps each YEAR, when I use to buy that many stamps each month. However, I do shop for and keep inexpensive cards for “other” occasions (in other words, not birthday or anniversary), so that I can send a card off to someone who let it “slip” they are going through a tough time.

3. Follow up with a text.

It takes 10-15 seconds (depending on how many thumbs you have), to send a quick text. If you’ve limited time, don’t text an open-ended question. Just send off a quick, “Wanted you to know I’m thinking of you today and hope your day is better“. It doesn’t take much time and it likely means THE WORLD to that person.

A Significant Change in the Dream

Ok. I explained earlier that I do have one specific change that happens in my dream and over the years I think I have this figured out as well. Sometimes when I am “frozen”, a person or persons do come up to ICE CUBE Denise and Chloe, and try to help. Guess what? These are usually people I’m thinking about consciously, who are also going through something significant. For example…

I had this dream this past week after a fall on the deck. The injury was significant enough to warrant a doctor’s visit, x-rays, and a cancelled trip. I have been thinking about and praying for two specific people, both of whom showed up in my “falling dream”. One had surgery last week, the other is looking at surgery in her future. Both came and patted “frozen Denise and Chloe” and told my icy self that “everything would be OK”.

You know what? Having a support group MATTERS.

10538663_10204128535430633_9142153402343424683_n

It doesn’t mean that you need to join an organization (although there are benefits to doing so). It does not mean you need to find a group in which you stand up in a circle and say, “Hello. My name is Denise and I have invisible disabilities“. However, there is significant HELP in having a person or two who GET IT.

A tribe.

People who understand where you are coming from when you experience your life – your “normal”.

Thankfully, it is fairly easy to find those folks. The Internet has opened the door to really connecting with others who are like-minded, live what you live, and provide support simply because they truly GET IT. Maybe you have a friend or confidant who is that support for you, but they don’t actually share your diagnosis. But folks? Everyone has something. Life is hard. We all have difficult times. The two folks who showed up in my “falling dream” last week do not share my diagnosis. They do share living a difficult life but PERSEVERING. That’s why these folks show up in my dream. Support makes a difference.

You can be that kind of support. It will grow you. It may be time consuming at times. You may find a reciprocated “shoulder”. You may not. I don’t know about you, but at the end of my life I want to be the kind of person who patted a few ice cube people. I want to be that person who tells someone THEY matter. What they are GOING THROUGH matters. One of my dream goals is to eventually see a puddle under every person in my crowd.

Because we all deal with something.

We can help each other to thaw out by caring, listening, hugging.

Denise Portis

© 2014 Personal Hearing Loss Journal 

Psychology Campus (2004-2008). The possible meanings of dreams. Retrieved August 11, 2014 from http://www.psychologycampus.com/dream-psychology/

Salovey, P., Brackett, M. and Mayer, J. (2004). Emotional intelligence: Key readings on the Mayer and Salovey model. New York: Dude Publishing.

Tartakovsky, M. (2011). How to Analyze Your Dreams (And Why It’s Important). Psych Central. Retrieved on August 11, 2014, from http://psychcentral.com/lib/how-to-analyze-your-dreams-and-why-its-important/0005975

Turn On Date

Tags

, , ,

Elmo bling

One of my favorite discussions to have with people who have chronic illness, invisible or visible disabilities, or living a “new normal”, is sharing stories of how their adopted vernacular throws others they communicate with for a loop. We probably all have stories to tell. If your life is different because of a surgery, technology, or diagnosis, you may be using words and phrases that confuse and irritate folks who don’t live a similar life. I try to be careful and take a quick look around at WHO I’m talking to when having a conversation, but that is after really screwing up a lot in the early years. Here are some of my more memorable screw ups:

Your Turn On Date

Johns Hopkins sends folks my way when they are considering a cochlear implant, especially if they have Meniere’s disease as well. I have learned that when talking to someone new to the idea of cochlear implants, you cannot talk to them like someone who has already had the surgery. Cochlear implant peeps throw around terms that make perfect sense to US, but not so much to others. Case in point: I met with a lady with Meniere’s at a library who was investigating cochlear implants. At some point in the conversation I said, “Now the date you are turned on, you need to have a designated driver if possible. Everything will be so strange and you may not be able to drive safely if you don’t have someone to drive for you after you are turned on“.

Her eyes got big and she paled. She stuttered out, “Wha…wha… WHAT!?!?” I’m savvy enough to figure out by the way she answered that she didn’t understand my terminology. I thought I’d clear it up but succeeded in only making it worse…

Yes, when you go to the audiologist and they turn you on…” I stopped. Seeing her dropped jaw will silence me. I backed up and tried again, using “activation date” instead of “turn on date”. Do you know something? Unlike others who meet with me, she never followed up with post-surgery emails or meetings! <BIG GRIN>

I Lost My Ears

I had only been activated 8 months when I lost my ears. Now for CI folks, they get that when we talk about our “ears” we are talking about the external technology… not about our “listening appendages”. I was in a super Walmart, looking for a very specific jar of dill pickles (because yes… I’m that picky), when my cochlear implant – which has a magnetic coil to keep it on my head – flew off my ear and into the pickles.

Had I stayed still and searched the immediate jars I would have found it right off. As it was, being new to “hearing again”, I immediately stood up and screeched because my world had suddenly and completely gone SILENT. An older lady shopping amongst the same shelved pickles looked at me strange. I nervously picked up jars of pickles looking for my “ear”. The lady came closer and joked, “Are you pregnant?“. I turned to her with big tears in my eyes which made her come closer and immediately quite teasing me.

Are you OK?” she asked kindly. I looked at her and wailed, “I lost my ear! I can’t find it!

She looked at me bug-eyed and walked away. Quickly.

Thankfully I found my CI attached to the metal lid of some nearby olives. No wonder I couldn’t find it amongst the pickles.

I’m Not Turned On

When we lived in another part of Maryland, we use to have to drive a long way to go to church on Sunday. We actually went into another county to do so. Normally my family doesn’t listen to the car radio because they know that I’m totally incapable of tuning out the radio and hearing just the conversation. However, on longer trips, I often say, “I’m turning my ears off” so that they can listen to the radio and they know if they need me they only need to tap my shoulder. In truth, it is nice being able to sit in “total silence” from time to time. It is certainly conducive to “deep thinking”.

So one Sunday on our way to church, I gave the family heads up that I was going silent on purpose. I must have moved from “deep thinking” to day dreaming. We got to church, got our stuff out of the car, and Terry and I waved goodbye to the kids as we headed over to the building where we had small group Bible study. I’m still deaf at this point and I couldn’t tell ya if Terry was talking to me. I know my mind was somewhere else – that’s for sure! We went into the classroom and sat down at the big table. Some other couples were already there. One of the ladies leaned up so that she could see around Terry and said something. It was then I realized I still hadn’t turned my cochlear implant back on. “Oh! Wait, I’m not turned on!

I reached up and punched the correct button and looked around at a bunch of stunned faces. Terry was actually embarrassed. (If you know Terry, you know he rarely gets flustered). A few who caught on a little late began to snicker. Me? Well I thought it was just HYSTERICAL. So I managed to get out in between laughs, “Oooops. I need to find a better way to say I don’t have my CI on“. Terry quickly said, “Yes Denise. Yes you do!“. It took a number of months for me to live that one down.

Remember Your Audience

Do you live with a chronic condition or acquired disability? Have you become an expert in navigating your “new normal”? Can you “talk shop” with the rest of your population?

It’s hard to remember that just because WE understand what we mean, others may not. We tend to use words and phrases that become a part of our vocabulary. Try to pay attention to your audience. A good advocate learns to do that. You may have to deliberately choose to use a different word or phrase if no one really connects with it but you. For example, I had to stop referring to my bright purple cane as “my third leg”. I’m fairly naive and had no idea the shocked looks were from folks who had heard that phrase in a completely different context.

In order to really educate and advocate, you need to use terminology that the general public will understand. You may think a word or phrase is very obvious, but others may not ever hear that word in conversation. I was trained at Fidos For Freedom, Inc., to know how to advocate for accessibility with my service dog. The trainers didn’t tell us, however, that not everyone in the general public knows what the ADA is! (Thankfully, they also equipped us with great little brochures and handouts with the law explained on them).

Fibro fog” may only mean something to other folks with fibromyalgia. “CFS zombie” may only be a phrase others with chronic fatigue syndrome use. HoHearies can be figured out by most of the population, but is only self-identified by those who are hard of hearing. The general public may even make incorrect associations just because they don’t understand your chosen words. I had no idea anyone would ever think “tinnitus” was something caused by a cut from a dirty tin can.

You are a more effective advocate when you “consider your audience” and appropriately explain symptoms, treatment, and diagnosis. The goal is to educate after all. If you only succeed in confusing those around you, you haven’t really helped to educate.

What’s REALLY fun is when those closest to you start to confuse others as well. Terry often asks if I “have my ears on” now.

Denise Portis

© 2014 Personal Hearing Loss Journal

Folding Fitted Sheets and “Good ‘Nuff”

Tags

, , ,

fitted sheet2

My newlywed daughter bragged to me recently that her husband can fold a fitted sheet. Pressing for details I found out that he evidently can fold them where they are laying flat.

… like they just came out of the package.

… making Martha Stewart proud.

I think I hate him (just kidding…)

I’ve seen various videos, blog posts, articles and pictures explaining how to fold a fitted sheet. I once saw a 5 step-by-step diagram of how to fold a fitted sheet on a beautifully laminated bookmark.

Because evidently we worry about that while reading…

Evidently a newly laundered fitted sheet can look like this after folding...

Evidently a newly laundered fitted sheet can look like this after folding…

As a student and professor of psychology, it is fun to “look back”. Although I didn’t know it at the time, I definitely had OCD (Obsessive-Compulsive Disorder) as a kid. I’ve given some examples of things I would do to help me feel like I was coping and controlling in class before that made jaws drop. OCD can look different lived out in different people. For me, it meant ordering, organizing, labeling, etc. I had a full-size bed growing up with bright yellow “sunshiny” sheets. I’ve often wondered how that young, OCD Denise dealt with folding fitted sheets. Because you see? I can’t. 

Fold fitted sheets I mean. I must have gotten around that by only having one pair of sheets. When laundered, they went right back on the bed.

I’ve come a long way from that OCD Denise. Now some of you who know me WELL are saying to yourselves, “Honey? You’ve still got a long ways to go!”

But to give you an idea about how far I’ve come, look at the fitted sheet I folded this morning straight out of the dryer. As a matter of fact, I have my very own 5 step-by-step instruction guide:

photo-3

 

1. Remove from dryer and hold up high to avoid pet fur.

2. Shake to allow dryer sheets to fall to the floor.

3. While holding up high, match corner to corner.

4. Fold.

5. Admire work. It ain’t purty. But it’s GOOD ‘NUFF.

Stacked in a linen closet, it does not take up anymore space than one folded perfectly. At least… that’s what I tell myself. You see? I had to learn something. Sometimes you pat yourself on the back, murmur, “Good job!” and go on to something else. It’s “good ’nuff“. The sheets are clean, stacked neatly and await being put in use for the next time I change the sheets out.

Allowing a Fitted Sheet to Rock Your Boat

So when do you determine by reviewing your priorities, when to keep at that “fitted sheet” or when to determine it’s “good ’nuff”? Only YOU can decide.

I’m pursuing a Ph.D. in Psychology. I’m over half-way through and doing well. However, now I’ve reached the detailed statistics phase. And folks? I haven’t had statistics since the 80’s and long before the sophisticated analysis softwares were available. This past week I hit a wall. I mean that both literally and hypothetically. I have been staying up really late reviewing videos and media, reading, Reading and doing more READING, learning SPSS and writing like crazy. As a person who lives with invisible disabilities that include post-concusive syndrome, hearing loss, and Meniere’s disease, I require 8-10 hours of sleep each night just to live a “normal for me” day. I’ve not been getting that. I’m almost cross-eyed with fatigue. So this past week, falling more than usual as a result of that fatigue, I walked into my husband’s home office, showed him a new bruise from hugging a wall with ridiculous and unbridled passion, collapsed on the floor and bawled my eyes out. Do you know what my very wise husband reminded me? “You may not be understanding all of this. Just keep plugging away. By the time your dissertation is complete you will look back on this and realize you are very knowledgeable about your research and understand it well. For now you are doing ‘good enough’ and passing. You don’t need perfection at this stage“. Sometimes we have to “let go” of needing something to be perfect and accept that it is “good ’nuff”.

This past week a lady who has admired Chloe several times sat behind us in church. She leaned up and said something and honestly? I caught about 10% of what she was saying. (In case that doesn’t sink in, I was missing 90% of it <big grin>) I already had my cochlear implant on a special program to utilize the hearing loop in our auditorium. I’m one of the first people to tell folks new to hearing loss, “Don’t fake your way through a conversation“. However, it was obvious she was just saying something about Chloe again. She had a smile on her face, and I was set up to hear through the loop, not someone sitting on my “non CI” side and behind me. So I smiled and nodded my head and turned back to the front. Yup. Poor form on my part. But…

I have learned that if it is important and I responded with a smile inappropriately, someone will respond with a shocked or hurt look, confusion, etc., and I can hasten to explain I wasn’t hearing well. I didn’t see any of that on this lady’s face. She smiled, I smiled, and I determined then and there this “fitted sheet didn’t need to be folded perfectly”. For a few minutes I sat there thinking, “I have no idea what she just said!” I re-analyzed what I saw on her face, her indication of Chloe in a perfect down/stay and sleeping at my feet, a returned smile and decided, “You know? This fitted sheet (conversation) is not folded properly, but it is good ’nuff“! I brought my attention back to the service and felt OK about my decision.

This past Saturday, a fellow client from Fidos For Freedom rolled up to me in her scooter with service dog at her side. She has been with Fidos longer than I have and I consider her a friend and mentor. Another friend of mine and fellow client, Cara, is taking ASL (American Sign Language). She has been practicing her ASL with me during trainings. She is doing great (You rock, girl!). Cara noticed that I was talking to this other client who at times is hard to understand – especially when you have a hearing loss. Cara stopped behind the lady I was talking to and I know she was hesitating to see if she could interpret for me. I wanted this fitted sheet folded perfectly. I said, “I’m not catching what you are saying“. No faking nor presumptions on my part. This fitted sheet needed folded the right way because it was important to me. I love this lady and wanted to “hear” what she was saying. So she got out her little electronic board and began writing. It was what I needed to “hear” too. Cara waited long enough to see if I was “getting it” and then went on her way. I continued to communicate with this lady and left that conversation encouraged and with some great advice. I needed to hear her. I worked to hear her. She worked to communicate with me. Good ’nuff, wasn’t good enough. I needed to communicate 100% effectively with her. So… I did.

Living with invisible disabilities or chronic illness means that YOU have to decide what your priorities are and when to determine a task is “good ’nuff”. Only YOU can determine when you need to make sure something is accomplished to your satisfaction – to your personal standards. There are things you will decide to do that require work. It may mean you use up all of your reserves for the day. If you are into the “spoon theory“, you use every single one of your spoons. There are other things that happen during the day that result in the decision that, “this is good enough”. The worst thing you can do is stubbornly work at folding a fitted sheet that belongs to someone else. Worse, you allow someone else to bully you into re-folding one that you already decided was “good ’nuff”.

Are you one of those (annoying) people who can fold a fitted sheet perfectly? Well:

If-you-can-fold-a-fitted-sheet

 

Denise Portis

© 2014 Personal Hearing Loss Journal

False Coping Skills and Elephants

Tags

, , , , ,

IMG_1238

Hound dog knows when I’m “finished”

Ever wake up just feeling completely whipped?

I feel like I’ve developed GREAT coping skills. After all, you either learn to cope or you’re “done”. So the options are pretty clear cut IMHO. Two coping skills I learned early on in adjusting to my “new normal” as a person who is “differently abled”, include:

1. Start each day new. Yesterday is gone. Tomorrow will come without my worrying about it now. Handle today and today only.

2. Stay busy. Staying busy helps to keep your mind off your troubles and focus on the here and now. It can be busy-ness towards important things, or even the mundane.

The second one I use a great deal, but I’ll be honest. It isn’t exactly a HEALTHY coping mechanism. I don’t do well with a lot of down time. A perfect day for me is getting up (safely – believe me, it can be hard when you have a balance disorder and go VERTICAL for the first time that day), taking my dog for a walk while planning my day, re-enter the house in high gear without stopping until bedtime.

Yeah. Not always healthy. The problem with staying BUSY in order to cope is that it is a false kind of coping. This type of coping skill isn’t actually a coping skill at all. It is called avoidance. And friends? I do this really well. Some of you do too. (You know who you are…)

Staying Busy to Avoid

Do you “do busy” really well? It may be time to stop to discover WHY you stay so busy. Do you strive to remain busy to avoid unpleasant thoughts, actions, environments, even people? Don’t confuse healthy boundaries with avoidance. One is – well… HEALTHY. The other? Not so much. As a matter of fact, avoidance can lead to a number of physical and emotional problems. Psychologists have recognized avoidance for what it is for decades now. Yes, in the right context it can be healthy. But it is easy to AVOID to the point of harm. Spira, Zvolensky, Eifer, and Feldner (2004) explain that being busy to avoid our problems is actually a predictor of panic disorders. You see? The problem with staying busy to avoid something is that eventually you really will run out of things to do. Worse? Your body physically screams, “ENOUGH ALREADY!” and shuts down.

I am finishing up the last of numerous classes in my doctoral work and have already begun the very long process of dissertation study. This work keeps me really busy and it is work I actually enjoy because psychology is what I “do”. I work part-time as an adjunct professor and this helps to keep me busy. I love my work, love my students, and love to teach. The problem with working as part-time faculty at a community college is that it is impossible to predict how many courses you will be teaching semester to semester. For example, I taught the first summer school section, but not the second. I used the extra time in the beginning to catch up on some of my own school work and to do some “Spring cleaning” that had been long delayed… seeing as how it is SUMMER. These past few days though I’ve found I have had some down time. *grimace*

Forced Mindfulness

When I am forced to the point of literally running out of things to do… even for just a day or so, I find it debilitating.

Scan 3

Whoosh.

(Hear that? That was the air being sucked out of my lungs when the elephant in the room finally sat. On. My. Chest.)

I don’t do “mindfulness” well. I’m learning though.

Brown and Ryan (2003) explain mindfulness as being AWARE and ATTENTIVE. Let me explain on a more personal level and maybe you can “see” yourself somewhere in this:

Avoidance:

My new normal of hearing with a cochlear implant and living with a balance disorder is not easy. I’ve adjusted. Only to have to re-adjust. That’s OK. I’m flexible. Most of the time.

I work at a job I love and navigate life safely with a service dogMost of the time.

I am optimistic, cheerful, can poke fun at myself and enjoy busting my butt to help others. Most of the time.

I’m very busy and drop exhausted into bed each night and sleep well. Most of the time.

I have taken control of chronic depression and don’t let it control me. Most of the time.

I don’t feel sorry for myself. I like me. I recognize that I am doing well. Most of the time.

Truthfulness:

My new normal of hearing with a cochlear implant and living with a balance disorder is not easy. I’ve adjusted. Only to have to re-adjust. That’s OK. I’m flexible. Most of the time. 

Some days having a CI and Meniere’s disease sucks. I don’t hear perfectly. I feel left out. I’m tired of falling. I’m tired of running into things. I hate long-sleeves and high collars since they only hide bruises. I’m tired of adjusting. I’m going to cry. I’m going to scream. I may swear. 

I work at a job I love and navigate life safely with a service dog. Most of the time.

I love my job but it is really hard when the hallways are crowded. It can be overwhelming to have to rush from one side of campus to another. Crap. It’s raining? Really? *waves white flag*

I am optimistic, cheerful, can poke fun at myself and enjoy busting my butt to help others. Most of the time.

Sometimes I want to change my “… I’m fine, how are you?” to “I’m having a sucky day. And frankly? I don’t care how you are doing if you want to know the truth!!!!”. I’m going to have to ask for help. After all, Chloe cannot 1) retrieve a bag of dropped potatoes in the grocery store, 2) pick up that tiny paperclip without risk of swallowing it, 3) get the umbrella I dropped in a puddle without getting really muddy, 4) tell me EVERYTHING WILL BE OK.

I’m very busy and drop exhausted into bed each night and sleep well. Most of the time.

I can lay in bed and worry. 

I have taken control of chronic depression and don’t let it control me. Most of the time.

It’s hard when I have to “own” the knowledge that I will always “deal” with depression. 

I don’t feel sorry for myself. I like me. I recognize that I am doing well. Most of the time.

uh-huh. Ri -i -i -i -i -i…ght.

So yeah, sometimes I’m forced to pay attention and be aware. How is that helpful? Well, for starters attentive awareness facilitates choices of behaviors that are consistent with my needs, values, and interests (Brown & Ryan, 2003). It is healthy to really navigate personal feelings, thoughts, and even pain. David Cain wrote about mindfulness in a way that really “stuck” with me. It changed the way I view “forced attentive awareness”. Check out this great article, “How to Make Mindfulness a Habit With Only a Tiny Commitment“.

For me, mindfulness means being truthful with ME. I am learning to be mindful even when I am super busy. I do this because there will be days I am NOT busy and I want mindfulness to be an invited friend instead of unexpected guest. As a person of faith, it is also super helpful to be frank with God. In doing so, I am actually able to recognize false coping skills that in the long run are not healthy for me.

I’ve heard some folks say, “Oh golly. I can’t go there and allow myself to FEEL. You don’t know what I’ve been through“.

No. No I don’t. But I do know that pretending those feelings don’t exist do not change the fact that the elephant is THERE. At some point in time it’s gonna sit. On your chest. You won’t be able to breathe.

Be Mindful of Your Pachyderm

It is healthy to habitually and mindfully pay attention and be aware of what and who you really are. What are your struggles and successes? Where have you been, where are you now, and where are you going? Who is helping you get there?

What is really hard for you? What have you learned to do well? What do you need to change?

WHO ARE YOU? 

Don’t pretend that being mindful is the same thing as having your mind full. The latter is just another form of busy-ness on the cognitive level. Be attentive. Be aware. Do this with enough frequency that you can be mindful each and every day – for even just a few moments. I make it a priority to be mindful for a longer period of time – like a whole DAY, at least once a year.

But the elephant “sat” without invitation for me this past week. It took me by surprise. That is going to happen. However, if you’ve practiced mindfulness, you are going to discover…

YOU CAN BENCH PRESS AN ELEPHANT.

Denise Portis

© 2014 Personal Hearing Loss Journal

Brown, K., & Ryan, R. M. (2003). The benefits of being present: Mindfulness and its role in psychological well-being. Journal Of Personality And Social Psychology84(4), 822-848. doi:10.1037/0022-3514.84.4.822

Cain, D. (2013). How to make mindfulness a habit with only a tiny commitment. Rapitude.com. Retrieved July 20, 2014, from http://www.raptitude.com/2010/03/how-to-make-mindfulness-a-habit-with-only-a-tiny-commitment/

Spira, A. P., Zvolensky, M. J., Eifert, G. H., & Feldner, M. T. (2004). Avoidance-oriented coping as a predictor of panic-related distress. Journal of Anxiety Disorders, 18(3), 309-323. dii: 10.1016/S0887-6185(02)00249-9

Everything you ever wanted your audiologist to know…

Tags

, ,

10359013_10204485423482111_8593672202503336088_o

Hearing Elmo always welcomes guest authors. Although this site is a place of information and support for all types of disabilities and invisible illnesses, once in awhile an author has a very specific “hearing” topic. I know few individuals with more consumer experience with hearing loss advocacy and support than Judy Martin. She is my friend as well and fellow “heartstring” (a long story). If you have a good working relationship with your audiologist, this is a great article to pass along! 

Everything you ever wanted your audiologist to know . . .

Late last year, the Florida Academy of Audiologists (FLAA) and the Hearing Loss Association of Florida (HLA-FL) formally agreed to a partnership to encourage a fuller understanding of each other. Articles are planned for each other’s newsletters; Noel Crosby, my counterpart in FLAA, suggested my topic describe what consumers would like their audiologists to know.

– Judy G. Martin, Immediate Past President)

As I stand in front of my imaginary class, I’m aware that all the people in attendance have some degree of hearing loss. Some use hearing aids, cochlear implants or assistive listening devices. Many proudly display their multi-colored devices while others are more discreet – each according to their needs, wishes, or personality. We are brought together by one commonality, though, the desire to hear better. For some, it is an old journey, and for others a newly-begun one.

This class may be the figment of my imagination, but it is filled with real people from around the country. Inspired by one person’s remark of what the perfect audiologist would be like (thank you, Paul), I ask “students” to discuss how their provider could be the most helpful as far as their hearing loss is concerned. (Of course, we would be willing to know how we can be the perfect consumer, a subject for another time.)

Paul, from Michigan, speaks up first and says his idea of perfection would be the audi who is knowledgeable about Hearing Assistance Technology (HAT); about the t-coil and the ways it can be used; and at least some familiarity with Bluetooth and FM; and where to find products to assist with telephone, cell phones, TV, meetings and communication. If a hearing loop is set up in the office, he would be able to hear the receptionist. If not a loop, then a willingness to let him make and confirm appointments via e-mail. This perfect person would be compassionate and willing to share information about the ADA, hearing loss groups, and hearing loss counselors. Many first-time hearing aid users are at the beginning of a scary learning curve and in a vulnerable position. And finally, he or she could be proactive in helping him to understand the fitting and adjustment process.

Jimm, who lives in New York, has a short and sweet idea: his audiologist would make the perfect earmold!

Having a receptionist who doesn’t whisper is the fond wish of Betty, from Delaware. Soft- spoken office workers, or those who don’t face the patient, strike terror in the hearts of those with hearing loss. Hearing loss-related news and magazines (especially, ahem, the HLAA Hearing Loss Magazine) would be quite beneficial when placed in the offices of audiologists and ENTs.

Sarah, Illinois, agrees that hearing loss information and magazines are so important in addition to helping find outside support groups. She also wishes that audiologists were affiliated with HLAA or a local chapter. Sarah suggests that attendance at an HLAA Convention would be beneficial as it is totally patient-oriented, in that everything is seen from the viewpoint of the consumer. She believes a little more explanation of what to expect when purchasing a hearing aid is something that would be helpful to her or knowing the importance of adjustments. (A journal kept by the consumer would be helpful here, making notes on what noises are bothersome, which need to have volume increased or decreased.)

Making sure that every hearing aid, unless it’s too small, leaves the audi’s office with a manual t-coil included. Since the t-coil can at least double the benefits of the aid, Germaine, a resident of Florida, says it’s important it have a volume control. Automatic volume control works well in many cases, but too often the experienced user wants and needs to override the control – a combination of both would be good. All that said, since t-coils are used with phones, both landline and cell, looping technology, FM, Bluetooth and other assistive listening technology, no self-respecting hearing aid should leave home without it. She hopes that the hearing instrument provider’s office will have copies of HLAA’s consumer checklist for purchasing hearing aids.

Laura, in New Jersey, agrees and also wishes that the importance of manual t-coils be uppermost in everyone’s mind.

Jennifer, from Pennsylvania, wishes the idea of hiding hearing aids was not promoted because it adds to the perceived stigma. Advertising which promises invisible hearing aids works at cross-purposes with HLAA’s mission to provide awareness of our invisible disability. She also thinks that more familiarity with the BAHA device for persons with single-sided deafness will guide those for whom the traditional aids won’t work.

Richard, who resides in Florida, believes a high number of hearing aid consumers are not conversant in discussing or understanding their own audiograms. Much of the relevant information available is written on a level beyond the comprehension of some consumers. Perhaps a brochure or flyer could be created to explain to all so they would understand their own degree of hearing loss and become audiogram literate!

From Montana, Tamie seconds the motion that professionals be educated about the importance of t-coils. She reached that conclusion when a new audi in town donated headphones for those with hearing loss to a local live theater. They were the kind which required the removal of one’s hearing aids.

Audiologists provide an invaluable service in the treatment of hearing loss, says Ed from Florida, but he wishes there was more proactivity in the education and advocacy process. It would be so helpful for the audiologist to initiate a discussion about hearing loops, captioning, cell phone usage or the Hearing Loss Association of America. Suggesting to new patients, who obviously need support, that they try a local HLAA chapter would help eliminate much bewilderment. It would be desirable for audiologists to take the lead on important advocacy missions such as being the first to install a loop in their offices. He goes on to say that since so much of his support comes from HLAA and other outside sources, he wishes treatment could be seen as a team sport because so much support is needed.

Also from Florida, Joan thinks audiologists could tell patients they need an aid large enough to accommodate t-coils even though the user may think differently. Spending time explaining why this tiny device is so important and how some of the applications of the t-coil will benefit the user is greatly needed. Hearing in noise and recruitment are two major problems professionals can explain in laymen’s terms even before the patient is troubled by them. If audis sell equipment such as FM and Bluetooth systems, it is imperative they be able to instruct patients in their effective use. Finally, Joan wishes that professionals would tell users about HLAA and the availability of a local chapter. She doesn’t believe that any audiologist today is unaware of the value of support groups for their patients.

Judy from Ohio said her ideal audiologist would keep current with the latest news and devices. She suggests joining a consumer online forum to learn what’s on the mind of people who have hearing loss. Judy sent her hubby (a newbie) off to have his hearing tested and when he inquired about t-coils at her behest, he was told that “they are not being used much any more because people are getting away from that.”

Cheryl, who lives in Florida, takes a different tack and says consumers should realize it takes patience and perseverance to use a hearing aid and a good result comes from numerous adjustments. Hearing aid users should not put their aids on the shelf or in a drawer as they need to be used daily. She also believes the consumer should know about the t-coil, how it works and where it works.

California resident, Cindy, hopes the high cost of her devices would include minor technical service, adjustments and guidance for a specific period of time. She would appreciate the audis being knowledgeable about the products they sell and being able offer instructions about warranties. She’d like it if the professional would listen to her, ask her questions and know that, in her eyes, they are as important in her life as her primary care physician or her eye doctor. After being successfully fitted, Cindy would like repairs to be made as quickly as possible even if returning them to the manufacturer is required.

Programming aids according to the user’s needs and real world feedback, not factory- recommended settings, is the wish of Tamara, who lives in Texas. She hopes they will take the time to share their knowledge about t-coils and the less expensive non-proprietary assistive listening technology. Further, she would like to be instructed about financial assistance, payment/ financing options and government assistance programs. To her, it would be extremely beneficial to offer listening therapy, living-with-hearing-loss classes, education for spouses and family members in addition to giving advice on support groups which would address the social and emotional factors.

My imaginary class ends on a high note with everyone agreeing that hearing loss professionals cannot be all things to all people. They believe that most audiologists are already well-rounded in their knowledge and possess a willingness to help. These suggestions are offered in hope that they might help fill in the gaps.

by: Judy Schefcick Martin

 

 

TONS of Demerits = Life Turning Point

Tags

, , ,

demerit

I went to a Christian University right out of high school. I lived in a small rural farming community with no Christian colleges nearby so I thought that I may as well go to the one my parents attended … 5 states away. What I didn’t realize, is that little had changed in the 25 years since my parents went there. Rules, regulations, and unequal criteria for males/females were still early 1960’s. If I had it to do over again, I would have transferred out after I met my husband-to-be my Freshman year. He was smart and he did that. I’m stubborn though and wanted to finish where I started. I remember the first week when I received my first demerit. I still have every demerit I ever received. Back to that in a minute…

Some Background

You see? In high school I was “the weird one”. I had some close friends, which coupled with my dream of “leaving forever”, was part of the reason I survived high school. I grew up in a legalistic, religious background. It was a loving home… and most of what I experienced I wouldn’t change because I’m sure it is a part of who I am today (and I happen to like who I am today). However, in high school I was not allowed to do anything OUTSIDE OF SCHOOL. No “dragging main” on Friday and Saturday nights. I wasn’t allowed to date until I was 16 years old, and by the time I hit that milestone everyone thought I was “weird”. I didn’t get to go to movies or dances. I got really tired of people thinking I felt as if I was better than everyone else, when the boundaries put in place were not of my choosing. I was bullied. I’ve never really talked about it to many people. Classmates would probably be shocked if they knew some of the things that happened to me when I was caught in the gym alone, or in the hallway on the way to Study Hall. One of my bullies (a second cousin one year older) would actually follow me into the bathroom (he was male) and shove me around just for kicks. Another bully, also one year older, not only shoved me around and called me names, but he pinched private parts, threatened me with horrible death threats, and basically made my life hell. I would just see him coming and start to have a panic attack. I learned to duck into safe places like the office, or favorite teacher’s rooms “just to say hi” to escape an encounter with him. One of the things he constantly pounded (quite literally) into me was that I thought I was better than everyone else because I was so “holy”. This is the baggage I took into college with me <smile>!

Yay! A Demerit!

By the time I was 18 and started getting written up (for really ridiculous things), I began to really excel at breaking stupid rules. Sure, I got a LOT of demerits but I did plenty of things I never got caught for either. I don’t say that in a bragging way. My point is that I really was proud of having proof on paper what a “rebel” I was. I even sat through some “sermons” from hall monitors and dorm mothers because of what my last name was. My family name was known at this university and they couldn’t believe I wasn’t behaving “perfectly”. I got married young and tease my husband that it was “just to get out of the dorm”. I even received some demerits after I said “I do“… for sitting to close to my husband in chapel. *rolls eyes* But ya know something? I hung on to every single one of those demerits because they were important to me. They represented a turning point in my life. I finally realized as a young adult that I could make decisions about what I would – and wouldn’t do – by myself. I really filled my lungs deeply with the freedom of that feeling! Demerits were received for not meeting someone else’s expectations. Now I could determine what my own boundaries were, what my expectations were for my own life.

I’m a person of faith (and haven’t tried to hide that on here), but I like to think I really live my faith and am a REAL person. Life isn’t about rules and regulations. Nothing wrong with some of those as they keep us on track, help us reach goals, and provide security. However, these rules and boundaries are only good when they set us free, not when they cripple us. Trying to follow someone else’s rules will only get you a box full of demerits. You have to believe what you live and live what you believe.

Life Turning Point

My college experiences and changes set the stage for how I handle life today. It was a turning point for me. I stopped apologizing for who I was, and felt comfortable in my own skin because *I* had made decisions and set standards for myself that I approved of and felt comfortable with as well. If someone didn’t like what I did, I gently (OK, sometimes it wasn’t gentle) argued that I respected their choices, so they should respect mine. I learned to be responsible for ME. I wanted to live a transparent, REAL kind of life, and wanted to make a difference because of that “realness”.

I had single-sided deafness from a car accident at the age of 6-years-old. I had my last ear surgery at the age of 18. I STILL think it took us all by surprise when I developed rather rapid, bi-lateral,  progressive, sensorineural hearing loss after the birth of my kiddos. At the same time, I developed Meniere’s disease (although I didn’t know what it was at the time). I determined early on what kind of “person with disabilities” I wanted to be. I would be responsible for who I am and how I cope. My top TEN decisions that turned my life around:

1. It is OK to grieve. It is OK to scream.

I learned how important it is to give yourself permission to FEEL. Bottling up those feelings only leads to physical and emotional problems.

2. Discover your “safe people”.

I’ve blogged about this before. However, find who is “safe”; cherish and nurture these relationships. (Some of those posts are HERE, HERE, and HERE.)

3. I can “be deaf and have a balance disorder” however I want!

Disability and invisible illnesses are often unique and you may not share exactly the same symptoms as another. Own who you are. Do what makes you comfortable with your “new normal”. For me this means bling-bling on the cochlear implant, bright canes and assistance dog. I am far better served to make the invisible, visible.

4. When necessary, get professional help.

There is no shame in seeking help. Finding a trusted, objective professional can be very beneficial for a variety of reasons. If you aren’t happy with who you are seeing, find someone else.

5. When necessary, ASK for help from others.

There is no shame in asking for help when you need assistance. I have never had anyone turn me down if I ask for help getting to my car, or to help me identify what sound Chloe is zeroed in on. In spite of the negative headlines, most people are nice. Most are glad to help when asked and feel good about offering assistance. (There is a trick to this though – you DO have to ASK. If you are an independent peep like me, folks have learned to wait to see if I ask for help).

6. Believe you can make a difference.

I don’t care what your limitations are. I have never met ANYONE that didn’t have a way to make a difference – to be a catalyst for positive change. Our disabilities don’t limit us – WE limit ourselves.

7. Avoid negative people.

We all have these folks in our lives. But you can limit your interaction. Set boundaries. Protect yourself.

8. Dream big. Have goals.

Just because special challenges “rocked your world” doesn’t mean you can’t have short-term and long-term goals. Your attitude is the only barrier to achieving these.

9. Write. Share. Take photos. 

Thinking is great. I recommend THINKING. However, the single most powerful tool I have is my writing. I know others who draw, take pictures, or attend support groups and share. Make sure your “new normal” is something tangible, something you can look back on and identify and recognize change.

10. Don’t work at meeting someone else’s expectations.

If you haven’t learned this already, here’s a news flash. You can’t please everyone. It is healthy to have expectations for yourself, but those alone are all you should work towards.

Have you ever received “grief” for not following someone else’s directions about how to live your life? As a kid, this is OK because we need older (and sometimes wiser) folks to give us direction and instill good habits. But as an adult, you are responsible for you. Don’t apologize for choices you have made. If you deal with your challenges a certain way and it works for you, pat yourself on the back. Be careful though. Like ALL people, we can become focused on self. That isn’t what I’m trying to encourage here. We need other people. Don’t isolate yourself and say, “to heck with the rest of the world”.

Denise Portis

© 2014 Personal Hearing Loss Journal

 

Does Your Butt Glow?

lightning bug

Do you love insects? Crazy about science? Get a thrill over cReEpY cRaWlIeS? Were biology and zoology courses your favorite?

… You may not want to keep reading. No seriously. This post is about as far from scientific as it gets. I’d hate to give you heartburn, so all y’all who are entomologists at heart need to just exit this website and visit me again real soon. <smile>

Whether you call them lightning bugs or fireflies, chances are you have seen them. Actually, I don’t recall growing up around fireflies so they must not be indigenous to southeastern Colorado. I would see them when I visited my grandparents in Ohio during the summer, and then I saw them all the time when I moved to the South. It wasn’t until I had kids though that I really began to think about fireflies. Kids ask the craziest questions and it make us think. “Mom, how do their butts glow?” As this was right before the Internet had become available in household homes, I had to pack the kids up and go to the library. If you are younger than 30 you may not know what that is (a library, I mean). I found a number of books on these bioluminescent insects and the kids and I studied up, becoming pretty knowledgeable about fireflies. Their butts are not actually what light up – it’s their abdomen. However, from our vantage point? It clearly is their butt. There are thousands of types of firefly species, but the kind we have here look like this:

firefly2

After we figured out the HOW, the kids then wanted to know WHY. Scientists think fireflies light up for three primary reasons. 1) To find a mate. Each species has a specific light, pattern, flash intensity, and chemical. Fireflies can tell by the flash who is who. 2) To warn others they taste nasty – especially in the larvae state. This helps everyone. The predator is warned off that this larvae is toxic, and the larvae keeps from being munched on – win/win! 3) To communicate. Two species actually flash in unison – a firefly CHORUS. It only happens in southeast Asia and in the Great Smoky Mountains National Park. They time the flashes so that it all happens at the same time… in UNISON. Can you imagine? Thousands of fireflies flashing in UNISON! It can light up an entire meadow!

Does Your Butt Glow?

One of the frequent topics of emails from readers is that of INVISIBLE disabilities or illnesses. Some argue that the fact their illness is invisible, works to their advantage. (I’d LOVE for some of these folks to write for me because I love various opinions). I’ve always been an “out of the closet” kind of person about my disabilities. Well, I take that back. In the very beginning, I was not. It wasn’t until I had a series of encounters with people who didn’t know I could not hear, that I learned to make it visible. I’ll never forget the first time I was knocked out of the way because I didn’t hear that someone needed to get by me. So it started with little magnetic badges that said, “Please face me. I read lips.” This was an advocacy FAIL. People would read the badge and then loudly and with exaggerated enunciation talk to me with a pre-school vocabulary. By the time I had hearing aids, I decided to have super colorful ear molds. Shortly after that I started adding bling-bling. By the time Meniere’s disease had really become an entrenched part of my daily challenges, I had bright chrome-colored canes, blinged-up gadgets and a large service dog. For me (a very personal decision) making the invisible – VISIBLE – benefited me. I suppose you could say my butt glows. I didn’t need to find a mate, but I discovered my openness drew other like-minded and similarly challenged people to me. People who also had hearing loss or balance issues felt comfortable asking about my own struggles – not in an intrusive way, rather… a “HEY! Our butts glow the same!” kind of way. Total strangers would stop and ask me about cochlear implants, canes, and service dogs.

Because my butt glows, predators know I taste nasty.

Yeah. That needs further explanation.

Some people are uncomfortable around people who are differently-abled. My openness lets those folks steer clear. I see them in my peripheral sometimes. That’s ok. I’m not contagious but I totally understand that some people are not comfortable around people who are different. It isn’t my goal to ram my disabilities down another’s throat. My “flash” is different and I “get” that our butts glow differently. Some people steer clear because they don’t think I should have a service dog, or should even be out and about. I was at a Rite-Aid once when a store employee asked me why I’d go out with a service dog. When I told her all the things Chloe can do for me (and that it was my right to have her in public places), she said, “Why don’t you stay home where you are safe?” I was stunned. I told her that I had a life, and I was going to live it… even if it meant I live it having to do things a little differently. So some predator kind of people see my glowing butt and are warned off. I’d rather them steer clear than come up and take a bite out of me. I bite back.

I also buff my glowing butt and make sure the wattage is at maximum levels to be a good advocate. Before I started being open about my invisible disabilities, my ability to make a difference was limited. In a way, my luminescence has made me bolder. I serve on various committees and invest myself in causes that I once did not know even existed. I communicate with my butt glow.

Does your butt glow? Do you live with a chronic condition, invisible illness, or invisible disability? I encourage you to just THINK about being more open about it. Maybe you don’t want to go around mooning everyone with your glowing behind right off the bat. Just consider flashing some “light” once in awhile.

Denise Portis

© 2014 Personal Hearing Loss Journal

 

 

Quiz? AMEN! Are you Cued?

Chloe automatically retrieves a dropped grocery list in the store. I don't have to prompt her first.

Chloe automatically retrieves a dropped grocery list in the store. I don’t have to prompt her first.

This past Sunday, Chloe got up about 1/3 into the service and stood from a down/stay. My husband looked at me strange and raised an eyebrow. I mouthed and also signed, “Amen“. His expression changed immediately. He had forgotten that Chloe cues off of “Amen” and gets up and prepares to stand/brace for me to leave. I’ve never taught her “Amen” means LET’S GO. She figured this out on her own after being with me so long and because we DO go to church on Sunday.

I’ve discovered she doesn’t even need a lot of time to learn to cue on a new word.  I’m teaching a PSY-111 class this summer (Intro. to Psych.) and it is an accelerated class. We go 4 days a week for 2 hours and finish in 6 weeks. I’m trying hard to keep it interesting, fair, and encouraging. These students are really excelling. But… I am having to teach a little differently. Usually I mix it up and have small group activities, lecture, large group activities, special speakers, etc. In this summer school class I have to keep it moving. We do almost a chapter a day! Anyway, Chloe continued to pop up and come to stand by my knee at about the same time each class period. I was like, “Whaaa…?” (I have a way with words, yes?). So finally I said, “Listen y’all… what is she cueing off of? What am I sayin’ that is makin’ her get up?

So my students started watching and paying attention. It only took a day or two for them to figure it out. When I say “QUIZ“, Chloe gets up. Why she has equated that with my needing her, I haven’t figure out yet. But it is always when I say this word.

We Cue as Well

Do you know we tend to cue too? It is usually a defensive reaction. In psychology we call it “contextual cueing”. We do it automatically either from visual cues or audio cues.

I have a hearing loss. I miss things. If I’m tired, I miss things a LOT! Sometimes I cue off the context and “fill in” what I miss. This is implicit memory, for my subconscious is at work filling in what I have experienced hearing in the past. Something that people who are differently-abled or have chronic illness have to battle is jumping to conclusions. Especially if you’ve been hurt or wounded before!

Example: One of the most hurtful things you can say to someone with hearing loss is “never mind“. I’ve been told this enough that I cue off of hearing the words or hearing what I THINK were the words. Someone said this to me recently and I’ll be honest. I went OFF. They turned to me and listened to my entire rant (God bless them) and then calmly said, “Denise, I said I’M OUT OF MY MIND. I couldn’t find where I put that paper”.

oh

In this case, I was standing to her side. I heard what I thought was “never mind”. My experience with these words has never been positive. I went off. Unjustly. Sometimes we jump to the wrong conclusion and like Chloe, get up to help even though we haven’t been asked to do so. Or go OFF.

Example: Not to long ago I mashed the button to call the elevator and waited for it to come to my floor. I watch Chloe’s ears to see when it arrives, because looking up to watch the lighted floor numbers makes me dizzy. Chloe’s ears perked up and I stepped out of the way so that people could exit the now opening elevator. After everyone filed out, I held the door with my body and loaded Chloe and my stuff. As I turned, a man moved as if he was going to get on the elevator, but then stopped, rolled his eyes, and stepped back.

Now I could tell you some stories about people seeing a service dog on an elevator that would make your hair curl. Well if your hair is already curled, it would make your hair straight. I digress…

I’ve NOT had great experiences with strangers on elevators. The man must have caught my look (which made me wonder what the heck my expression must have looked like… I’m guessing PEEVED) and shoved his hand into the closing door causing it to open back up. He said, “It’s not YOU. I forgot something and have to go back and get it. Pretty dog!“, and he stepped back while the elevator door closed on my astonished self and tail wagging dog.

I cued poorly.

It’s easy to do. We have experiences that shape how we interpret the world around us. We on purpose or inadvertently “cue”.

You May Not Like It, but You are an Advocate

You may not like it, but you are an advocate whether you want to be or not. You can be a good advocate. You can be a suck advocate (if so please keep your mouth shut – grin). You can be someone who tries really hard but have not learned to advocate in a positive way yet. You can learn…

My husband is my “wet index finger” held to the wind. Poor colloquial expression choice? Not really. You see he pays attention and warns me if I’m getting “testy”. He knows that my heart’s desire is to practice what I preach. I want to be a positive advocate. I believe it is the only way to influence real change. I may have a week where I’ve had some access issues with Chloe, several people have said, “Never mind”, or I’ve had trouble communicating again and AGAIN. I can get testy. I asked him to keep me apprised of any bad attitude that starts to LEAK OUT. If he starts to sense really negative vibes from me, he lets me know (from a distance… behind a pillow blockade). He pays attention to which direction the wind is blowing. Is she getting negative? Is she justifiably angry? Sometimes I cue by jumping to conclusions. I want to know before I reach that point. He has (*graciously*) agreed to help me with this. (Ain’t he SWEET?)

Have you been conditioned to a word or phrase, a “look”, or a body stance? Do you cue off it and jump to conclusions? Now some of you readers out there are thinking, “I am rarely wrong. When I cue it is a correct cue!” (Don’t look so innocent out there… you know who you are). What we forget is that improper cueing is the result of being convinced we are right. We need to work hard at giving people the benefit of the doubt. In the end, our advocacy becomes more positive, more believable, and most importantly – powerful enough to truly produce change.

Denise Portis

© 2014 Personal Hearing Loss Journal

Follow

Get every new post delivered to your Inbox.

Join 805 other followers