January 2017 – Hearing Elmo

Half a Stick of Juicy Fruit Gum

Published on January 30, 2017 by hearingelmo4 Comments

I miss my grandmother (Vina Jewell Burhenn – Isn’t her name the GREATEST?). As I stopped to think about how to approach my subject for Hearing Elmo this week, I found myself thinking of a very special memory.

It was always a treat to sit with my grandparents in church on Sunday. I think I convinced myself that Grandma would let me get away with more, and my mom and dad were going to make me be “super good”. The pastor was my uncle, Cecil, and so even as a little kid we were expected to be an example to other little kids in the church because we were “kin”. So whenever possible, I always sat with Grandma because I could get away with more – AND… she always gave me a 1/2 stick of Juicy Fruit gum.

Naive kiddo that I was, the truth was that Grandma made me be even more “golden” and because we sat three rows from the front, my parents sitting behind – and to the right of us – could STILL see everything I did.

In the earliest years, I don’t think I ever questioned, “why a HALF stick of Juicy Fruit gum?” I will have to hazard a guess that around 8 or 9 years old, I finally whispered and asked Grandma, “why a HALF stick?”

“When you break it in half, does it let the magic pour out?” I whispered.

Response: Blank Stare

“When you break it in half, is it teaching me to share?” I queried.

Response: Blank Stare

“When you break it in half, is it to make sure I come back for the other half?” I said softly, and with strategic wisdom.

Response: “Denise, I gave you a half a stick because it is ENOUGH”.

Oh. Well gee. I know my child-brain kinda hated the logic of that.

My grandmother would dole out half sticks of Juicy Fruit gum because it was ENOUGH. (Side note: What a shame that it was never Doublemint gum as I would have discovered at an earlier age that I was allergic to spearmint).

It Simply Doesn’t Take MUCh to be ENOUGH

I’m told I take after my grandmother in a lot of ways. Here are just a few FREQUENT reminders from siblings and parents:

I doctor my own ailments to my detriment. And I have Google, which Grandma did not!
I love animals – many times more than people.
I expect justice and fairness.
I will respect you, but by golly you better reciprocate. If you don’t we’re gonna argue!
I can be stubborn.
I don’t mind confrontation. (Likely only recently doing confrontation in the right way).

I think one of the things I get down about the most as a person who is differently-abled with a chronic illness, is that I often worry and fret about my limitations.

I can’t hear on the phone so I am not able to easily call up a friend and ask how they are doing.

I can’t see to drive at night (headlights trigger vertigo), so I cannot go to parties, meet-ups, etc. with friends at night. Most folks do stuff later in the day.

I can’t just drop everything and go to a friend’s rescue. My own limitations require that I determine if I’m physically ABLE. I must ready my canine partner, Milo. I am not a 9-1-1 friend. That grieves me.

You may have limitations that at times, cause you to feel as if what you have to offer is not as valuable. You see how other friends reach out to each other and are discouraged that you cannot offer the same kind of friendship. (If you’ve never read “Spoons” – you should. It eloquently describes life as a differently-abled person). You can only offer a HALF stick of Juicy Fruit gum and you are a little bit pissed off by that.

Do you know what I have learned? A half a stick of Juicy Fruit is enough. I may only be able to touch base with friends via text or Facebook, but taking the time to touch base is STILL appreciated. I may not be able to go to things at night, but when my daytime schedule allows, I can drop off a meal or come by for a quick hug. I cannot be a 9-1-1 friend and be able to just physically show up at an emergency. However, my friends know they can text me or private message me and I will drop EVERYTHING to pray, encourage, and be there for them.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”
― Ralph Waldo Emerson

We want to make a difference. We want people to see our value. We need to be needed. We all strive for that purpose in different ways.

Maybe you are passionate about social justice issues and do all you are capable of doing.

Perhaps you are a writer – and do so to encourage, educate, and advocate.

Maybe you are an artist. Your drawings, photos, paintings, and sculptures reach out and change people.

You follow up with hurting people and ask them how they are doing NOW.

Your HALF stick of Juicy Fruit is pretty darn important. What you CAN do… what you are able to do… is ENOUGH.

Don’t let anyone tell you anything differently. If they do, give them my number and I’ll take care of it. <wink>

You have value. Believe.

Denise Portis

©2017 Personal Hearing Loss Journal

Coming to Terms

Published on January 23, 2017 by hearingelmo1 Comment

Deborah Marcus' blog "Visions of Song" — Deborah Marcus’ blog “Visions of Song”

It is always a treat when guest writers post for “Hearing Elmo”. I never wanted this blog space to be all about “me” and my own issues. Please let me know if YOU would like to write for the site!

Deb has been a friend for so long, I would have to stop and burn calories just to remember the when and where we first connected. I love her like a sister and her presence in my life has been a blessing. Deb writes (click the photo above to visit her blog) and is a photographer as well. As a matter of fact, I re-designed my guest bath around her dragonflies. A loving “welcome back” to my friend, Deb, as she shares some things that many of us with disability, chronic illness, or special challenges deal with on a daily basis.

From the time I was in elementary school, I understood that life is not fair, that it’s not even a question of fairness, and that readjusting one’s perspective is something that must occur for the full expression of the self, time and time again.

Of course I didn’t think of it in quite those terms when I was 6, 8, or 10 years old, but I experienced it. I imagine we all do in one way or another, whether by subtle shifts or dramatic events that leave us no choice but to consider this a reality of being human.

Here are a couple of examples. Each of us has some of our own.

-That moment at the audiology clinic, age 9 or so, where I went every couple of years for a hearing test as there is hearing loss in my family. I heard someone say, looking at the audiogram: there it is, the mild to moderate hearing loss. I didn’t know how to read the graph at that time, but my maternal grandmother was hard of hearing and I understood it from that vantage point. I would be like grandma, hard of hearing. Reading lips. I didn’t understand that I would lose the ability to hear birds singing, or the many nuanced experiences that we take for granted when we are able to hear, but I was able to internally adjust to my reality.

-A different moment, after a terrible event at home. I went out into the yard, in the dark, in winter and lay on the snow-covered grass. I looked up at the clear sky, full of stars, and as my breathing slowed to a normal rhythm, thought how beautiful it would be if I could just fall asleep right there…and never wake up. After a while, I felt something move me. You might call it God. I internalized it as a spirit of some kind. It said to me: No, it’s not your time. Stand up. Go back inside and warm up. Now I understand that as either depression, or self-preservation, or a little of both. I did not mention this to a soul until many years later.

In order to move forward after life-changing events, one has to be able to reckon with the forces within and without. I was motivated in the first example away from despair. As I looked towards my grandmother who could not hear, though it was beyond me at that age to recognize how small her world had become by that point in my life, I could see that she had her faculties and was loved by many in her circle, and so I had expectations of adjustment but did not despair. In the second example, in despair, I can’t say it was all me figuring out what to do, but had an experience that told me we can seek and find the resources to continue on.

Fast forwarding to today, I have experienced a number of life-changing events, some of which constitute frank disability. I have had orthopedic issues since middle school. I am now completely deaf without my cochlear implants. I am a survivor of mother-daughter sexual abuse, and with that came some episodes of physical and emotional abuse. I’ve experienced periodic vertigo since the occurrence of one of those physical episodes, when my mother, in a fit of rage I’ve never been able to parse out, pushed my 16 year old self backwards down a long flight of stairs. I only recall coming to at the bottom of the stairs, the crawl back up, the screaming that came from my mother’s throat that suggested that I was somehow at fault for my “accident”. I have struggled with (undiagnosed) depression for years. I’ve coped with physical pain for most of my life, with degrees of it varying over time. The most extreme of these pain issues resides in my facial nerve, with a diagnosis of trigeminal neuralgia.

Autumn... reflections — Autumn… reflections

Throughout each of my 53 years, I have found the will to continue on. Recently, I had to consider the prospect of foot surgery. Wanting to avoid it at all costs, I explored physical therapy, at the encouragement of an acupuncturist I see from time to time. My hope is still to either avoid surgery altogether or be better equipped to manage if I did. During my initial evaluation, I shared my vestibular/balance history. I had recently had the courage to tell my primary doctor about the trauma when I was 16, the vertigo, the neck pain, and now the increasing balance issues. It became clear at the first assessment that my vestibular system is in extremely poor shape. The physical therapist wrote “fell like a tree” in the assessment notes. I worked extremely hard both in therapy and on home exercises from September into December. While we made some modest gains on the foot issues, there was no progress on my balance issues. In December, my PT and I had a heart to heart. It is pretty clear that as a result of multiple factors, my vestibular system is not going to get better. I can continue to work on the vestibular exercises in effort to slow the progression, but that’s probably it. While all this was happening, my primary suggested I try a small dose of medication for the chronic depression, which I was forced to acknowledge, for the sake of self-preservation. We are working on finding a medication I can tolerate and which is a help to me.

It’s strange territory to be in this place where I feel more than a little bit at a loss. Where did my seemingly inherent sense of “carry on!” go? I’ve made adjustments all through my life, and did good works, and have had wonderful relationships and ending relationships and work and play and the same constellation of things that everyone else experiences in their own fashion. I wonder, though, who am I now? I have had moments of despair, when the thought that going to sleep and never waking up would serve me and everyone I know well. The only reason I feel strong enough to write this out in a semi-coherent fashion now is because I have begun to hear that spirit voice again, that says: No, it’s not your time. Stand up. Go back inside and warm up. To that end, I’m focusing on what my new life will look like, how to take the best care of myself possible, and how I can possibly continue to be source of support to others.

Stay warm, friends.

Deborah Marcus

Visions of Song blog: CLICK HERE

Civility and Respect

Published on January 12, 2017 by hearingelmo2 Comments

Milo-bear and I have been partners eighteen months now. I would have to say most of the wrinkles have been ironed out. I suppose anyone who has had a service dog long enough to be on #2, will experience some adjustment as you learn that dogs really are DIFFERENT. Milo is a different breed, sex, size, and personality. He has a different skill set than Chloe did. Poor guy was told “good girl” for at least a year, so I think being a different sex was one of the hardest verbal changes I had to make! I think that part of the reason things have been synced so well just recently, is that Milo trusts me now. For such a big guy, he’s pretty timid. He bonded to me quickly, but it took him quite awhile to understand that I was going to take care of him as much as he was going to take care of me. Milo respects me now (though he has loved me for a really long time).

If you know anything about dog training, you know that a dog doesn’t have to fear you to respect you. As a matter of fact if your dog fears you, then you haven’t taught it anything about respect and trust. Milo and I respect each other and are a great team.

I’m part of a committee on my campus called the “Civility and Respect Campaign”. Part of the Social Justice Collaboration, the committee meets to discuss ways to foster civility and respect for all persons on campus. The hope is that this campaign will strengthen a spirit of community. You don’t do that be fearing one another. Having been a part of the disability community for 25 years now, I have learned that differently-abled people are often feared. That isn’t a good thing. Below are some reasons I have come up with from my own life’s experience. You may relate to some of these.

We are feared because our diagnosis is not 100% understood.

I have learned that most people want to do the right thing. I would have to hazard a guess that most of the misunderstandings between some with special challenges and folks without, is that communication breaks down. If we want to be treated in a civil way and with respect, we have to learn to communicate our needs with civility and respect.

Isn’t it easy to get riled? My fuse isn’t as short as it was when I was 2 decades younger, but certain attitudes can really get me bent out of shape. When people approach you with an ugly demeanor and sportin’ a ‘tude, I have to work at not responding in the same manner. I literally take 5-6 seconds to respond when someone gets up in my face about why I’ve parked in handicap parking or why I’ve brought a (vested and clearly marked) dog into their store. These few seconds allow me to calm down and resp0nd appropriately. Good communication is not responding in like kind. If someone has a rotten attitude, the conversation can be turned around if you respond in the right way. Only one time has a person continued to “go off the deep end” when I was talking to them. I finally said, “I need to talk to someone that can stay calm”. The person evidently had enough sense to know they couldn’t, so they actually DID go retrieve someone else for me to talk to instead. It took less than 5 minutes to clear up the misunderstanding.

I’ve had conversations go the other way too. A well-meaning Giant grocery store employee came up and asked me if they could get my service dog some water while I was busy trying to retrieve a cart. The person was kind, but almost ingratiating. After I thanked them and said that my dog was fine “but thank you… could you help get this cart unpinned?” They then asked if they could help me get a motorized cart set up. (This after I asked them nicely to help me unpin a cart to use). Honestly? I’m sure my face spoke VOLUMES. I was thinking, ‘I’m standin’ here with a cane and a calm service dog. (After struggling and jerking on it on my own) I now have a cart to lean against as well. I have a list in my hand and would like to start shopping, only YOU are in my way and delaying all of that!’ The look on my face must have been scary. The employee held up their hands and said, “Oh now calm down I’m just trying to help”! (Really? Is that why you helped me unpin a cart?) Enough seconds had rolled by I finally trusted myself to speak. “Thank you so much for wanting to help. I’ve had special needs for a very long time and if I need additional help I am quick to ask for it. My service dog makes me a very independent shopper and I would really like for you to stop embarrassing me and making a scene”. The employee looked horrified and stomped away to go belly-ache to a fellow employee (likely about the unreasonable disabled person).

Was that the right thing to say? Hmmm. Maybe not. I know I kept my voice down and stayed calm (a herculean effort), but I’m sure my expression was dangerous. When I got to check out, a cashier I often see at the store said, “I apologize about earlier. They are new and don’t know you at all. They handled that all wrong and I took some time to explain how things should be done for shoppers with special needs”. I thanked them and finished checking out, mentally reviewing the whole thing in my head again and just amazed I didn’t deck the person with my pocket book. (Hey. It’s heavy and huge and would have done some damage)

It was a poorly communicated problem and solution.

2. We are feared because a previous encounter conditioned the person to believe we were going to be a problem.

Always… ALWAYS remember that what you do and say will affect the next differently-abled person who comes into that store, restaurant, doctor’s office, or other public venue. It’s amazing to me how a “knee jerk” response is conditioned. Do you know I’ve been wrong about this idiom for my entire adult life? I thought a “knee jerk response” meant the person said something they knew they shouldn’t have and so jerk their knee up to protect their (ahem) private parts to keep from getting kicked. As much as I like (even prefer) MY definition, apparently a “knee jerk response” is an automatic and reflexive response done without examining causes or facts. The origin of the word: From the tendency of the knee to jerk involuntarily when hit sharply, properly called the patellar reflex.

If you have ever had a “bad encounter” with a fearful person, they may have had a really bad interaction with someone before you. I was involved with a training at the police academy in our county and explained issues people with a cane and service dog may run into. I said, “Don’t take the person’s cane away. It’s a piece of adaptive equipment geared to keep them upright”. A commanding officer spoke up, “I’ve been hit by one of those. We have to take away something that can be a weapon!” I know my mouth dropped open. I had never thought of that! Together we worked out a way that the person could be asked to sit and the cane taken away safely. This officer’s experience created a predisposed suspicion of anyone wielding a cane.

As the differently-abled person, we have to remember two things. 1) The idiot person we are dealing with may have been conditioned to respond this way. 2) How we reply will affect the idiocy in the future. Sometimes I chant in my head, ‘BE NICE, BE NICE, BE NICE’ which means: “Denise! YOU be the bigger person and turn this conversation around!”

3. We are feared because… they are an idiot.

Sigh. No nice way to even put this. Sometimes? Sometimes you just need to find a different cashier in your favorite grocery store. Doctor’s office intake people being demeaning? Find a new doctor. Limited options? Place a formal complaint. (See: 1) https://www.ada.gov/filing_complaint.htm and 2) http://www.abilitycenter.org/blog/how-to-file-a-claim-against-a-business-for-violations-of-the-americans-with-disabilities-act/).

Civility and respect go a long way. If you cannot resolve a situation, file a complaint by any means at your disposal. Good luck out there and – erm – keep that knee up! Because I still like my meaning better!

Denise Portis