Fidos For Freedom – Hearing Elmo

This is My Fight Song

Published on May 7, 2017 by hearingelmo3 Comments

The first time I heard Rachel Platten’s “Fight Song“, it was actually sung by a different young woman who had faced a life threatening illness and “won”. You can find Calysta Bevier’s audition for “America’s Got Talent” HERE.

Yesterday, Fidos For Freedom, Inc. held its annual certification day. Service dog and hearing dog teams re-certify their skills and clients take a written exam. Milo and I passed with flying colors. While there, I was able to catch up with other teams. I overheard various teams refer to their service dog as their “partner in crime”, “wing man”, “partner”, “side kick”, “best friend”, and “best buddy”.

I’m a believer in the power of the human spirit. I have also seen many people who are differently-abled, dig deep and find the wherewithal to “just keep swimming” (as our friend Dory from Disney’s “Finding Nemo” taught us). At certification day, there is understandably some waiting in line. In an “all volunteer” organization, it takes a village of caring and committed volunteers to make certification day happen. However, clients do have to spend some time waiting for the next station to open up so that they can be tested on those skills. While waiting, I people watch. I’m easily caught up in emotion and found myself getting choked up looking around at various teams performing like super heroes. Can these individuals FIGHT without a service dog at their sides? Yes. I have no doubt. However, having a service dog makes each and every day a little easier.

It’s more than the skilled tasks they do, y’all! Milo retrieves dozen of items I drop each day. He is my alarm clock. He opens and closes the dishwasher, refrigerator, and gets clothes out of the dryer for me. He braces when I stand from a sitting position. He walks along side me and is only a touch away. Yet, the biggest benefit Milo brings to my life is psychological and emotional strength. Can I fight alone? Yes.

But I don’t have to do so.

Milo is with me 24/7. If I’m having a bad balance day, I go to work anyway knowing he’s got my back. If I’m dreading a large meeting, knowing in advance I will have trouble hearing, he provides the courage I need to do what needs to be done. I consider myself an advocate and “assumption destroyer”. However, Milo makes me a super hero. I think service dog partners forget those “under the radar” strengths our service dogs provide for us. On annual certification days, I am often reminded. Observing these teams and the trainers who coach/love them, brings these hidden benefits into startling clarity for me. We can count on other caring human beings to help and support us as needed. However, it is only a service dog partner that can be there ALWAYS.

I want to leave you with the lyrics and original video of “Fight Song”. I also am not ashamed to acknowledge that I found my own fight song with the support of a service dog. For me… it made the difference.

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?

This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me

Losing friends and I’m chasing sleep
Everybody’s worried about me
In too deep
Say I’m in too deep (in too deep)
And it’s been two years I miss my home
But there’s a fire burning in my bones
Still believe
Yeah, I still believe

And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?

A lot of fight left in me

ORIGINAL VIDEO

L. Denise Portis

Crappy Life Lessons

Published on October 11, 2016October 11, 2016 by hearingelmo6 Comments

I’ve had to force myself to log onto “Hearing Elmo” and write SOMETHING.

Anything!

I don’t like for too much time to go by and not be writing. Writing, blogging, and “talking to you” is important to me. I learn from you. I hope we learn from each other.

Saturday, October 1st, on her twelfth birthday, we said goodbye to Chloe, my first assistance dog. She retired in May of 2015. Chloe was diagnosed with Transitional Cell Carcinoma in August of this year.

I’ve started this post 8 times (and yes, I counted). The first couple of drafts were angry and mean. One draft was scary. Others were tearful and frankly? Were so full of random thoughts and words, the grammar itself forbade me from hitting “publish“.

Shame and Blame

On June 14, 2016, little Lane was killed by an alligator at Walt Disney World resorts. Like many who read his story, my first thought was, “Where the heck were his parents, and how in the world does something like this happen?”

Erin S., a friend of mine, fairly quickly put me in my place–and rightly so. Why do we immediately judge what we do not know?

We are shocked by something.
We are heart broken.
We look for someone to blame.
… as if that makes it better.

We cannot ever know the “whole story”. We simply are not privy to that. There is a backstory to every tragedy and every loss. Little Lane was killed as the result of an tragic (freak) accident and he cannot be placed back into the arms of those who loved him. Why do we search for who is to blame? Sometimes, folks?

Sometimes life just sucks.

Facebook is a wonderful place; especially for the differently-ABLED community. It is a place where technology levels the communication playing field. I have re-connected and strengthened friendships. I have “met” people in this venue I may never meet face-to-face. Last week, however, I “unfriended” and “blocked” 34 people I didn’t really know. Getting one to two messages a week, led me to believe they were simply out to get a “rise”. Many posted publicly and I exercised my right to DELETE. Haters gonna hate.

I created a public page for Chloe’s last chapter to raise awareness about an organization I love, Fidos For Freedom, Inc. I wanted to share what being a puppy raiser, sponsor, and trainer for service dogs was like. I wanted to share information about the valuable resource (even MINISTRY) of therapy dogs. I wanted to share how one dog changed my life and brought me back into the world of the living after a self-imposed isolation.

When bad things happen, we tend to look for answers or worse-someone to blame. After only reading the public “cliff notes” of Chloe’s life, I was lambasted by people for making the wrong decision.

You should get a third opinion. You could treat this and prolong her life an entire year!
How could you let her live the last month of her life this way?
OMG. It’s just a dog. Surely you have something better to do.

Now these are folks I don’t know and you are open to these kinds of messages when you go “public” with anything. I don’t mind blocking folks who just look for ways to get people riled. I fully trust that those who know me and know my husband Terry, trusted US to make the best and most humane decision for a furry family member. (More than that… a retired partner).

Ah. It’s an election year. It’s getting nasty out there in FaceBook land, isn’t it? Yet those I actually do know, I allow to post whatever they want on FaceBook. I may not click “like”. We may agree. We may disagree. More than anything though I hope we are the kind of “real” friends to agree to disagree… and love each other anyway.

I love Culture of Empathy’s website. I don’t agree with everything they post, but their message is powerful. Empathy is defined as, “identification with and understanding of another’s situation, feelings, and motives”. Empathy does not mean you may fully agree with them.

Y’all?

We can love one another and show kindness and compassion without having to acknowledge that an important connection and relationship is the equivalent of being identical twins. I love my husband and best friend, Terry, but the man is an idiot sometimes (albeit a sweet one). I do not agree with everything he says, believes, or “votes”. Yet, I respect everything he says, believes and votes and fully support him because I love him and he is my friend.

The Bible does not actually use the word “empathy” anywhere, yet it is inferred. It does use the word compassion numerous times. Compassion can be defined as “a feeling of deep sympathy or sorrow for another who is stricken with misfortune, accompanied by the strong desire to alleviate the suffering.” Especially when someone is faced with a critical decision or experiencing heart ache, can I not support them with compassion? How does judgement, argumentative jabs, and insistence they agree with ME, help? It doesn’t. It only shows I lack compassion and kindness.

I’m not perfect. But…

I want to be perfectly committed to being kind, being loving, and making a difference. I may not always agree with you, but if we have the kind of relationship that we can talk about disagreements with respect and kindness, and walk away still close friends? I count myself BLESSED.

Crappy Life Lessons

So a crappy life lesson? Sometimes when grieving and in pain, people are gonna kick you when you are down. Sometimes when important decisions need to be made, folks are going to call into question my own character for an informed and personal choice. I’m gonna love you anyway.

For you see? Love isn’t love if it changes on a whim and because someone disagrees with you. I believe the world would be a better place if our first thought when getting up in the morning was,

“How can I make a difference today? How can I show kindness?”

Hold me accountable.

Denise Portis

When Rules Don’t Apply to YOU

Published on August 19, 2016August 19, 2016 by hearingelmo5 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Milo-bear Portis

Successor dog extraordinaire

Where the People Aren’t

Published on November 24, 2015 by hearingelmo1 Comment

I recently saw the above picture on FaceBook, and since I love “The Little Mermaid”, (and because I know cats can be SO “offended”), I found this VERY funny.

As an Introvert, I often want to be where the people AREN’T. I, and most Introverts, love people. However, folks misunderstand what an introvert, and extrovert are.

Heck.

There is even a newly labeled “blend” for those who exhibit both introvert and extrovert tendencies (lest others think we have multiple personalities, or Dissociative Disorder). Evidently an Ambivert, is one who has both characteristics, often in dependence on their role in that specific environment.

The difference between an Introvert and Extrovert, however, is simply how a person prefers to RECHARGE. It has nothing to do with whether or not they like people. Extroverts recharge by being around others. Introverts recharge by being alone.

All this thinking about “versions” had me contemplating how each dimension is effected by acquiring a disability. As a person who is differently-abled, my mind just “goes there” automatically when I think about personality characteristics. Who copes “better” with acquired disability? An Introvert or Extrovert (or Ambivert)?

“Version” affect

Interestingly, research shows that people who are extroverted are more likely to acquire a disability that limits mobility or results in chronic pain (Malec, 1985). Evidently extroversion can be equated with higher risk behavior and decisions that may result in injuries associated with motor loss/coordination or chronic pain. Introverts, too, are diagnosed with acquired disability, but often with diagnoses that are “non-traumatic” (Malec, 1985). This doesn’t mean Introverts are not involved in motor-vehicle accidents, or risky behavior that results in injury. The research simply shows that extroverts are more likely to choose activities that could result in these types of disability. Frustrated in my search for information regarding “version” types and acquired disabilities more like my own — those that are the result of genetics and/or “unspecified contributors” for deafness and Meniere’s disease, I continued searching the research databases.

I came across an interesting study by Noonan et al., (2004), called, “A Qualitative Study of the Career Development of Highly Achieving Women with Physical and Sensory Disabilities”.

BINGO.

I figured I hit the jackpot with this search and find! What I discovered, however, has nothing to do with a connection between “version” types and successful coping with acquired disability. According to Noonan et al., (2004), successful coping includes “developmental opportunities (education, peer influences), family influences (background and current), disability impact (ableism, stress and coping, health issues), social support (disabled and nondisabled communities, role models and mentors), career attitudes and behaviors (work attitudes, success strategies, leadership/pioneering), and sociopolitical context (social movements, advocacy)” (p. 68). The difference between those who successfully cope and are extroverted and those who successfully cope and are introverted, centers around social support. An extrovert is more likely to identify and ask for help from any peers or individuals within their environment and in so doing actively engage in demonstrative advocacy. Introverts are more choosy about who they enlist support from, but are often “background” advocates. This is supported by research from Ellis (2003) in findings that include the difference in how extroverts and introverts enlist support, openly or privately – respectively.

“Version” Types and Assistive Technology

Having lived with special challenges for more than 31 years, I have had the (privileged) opportunity to meet hundreds of individuals who are differently-abled. Networking through organizations such as Fidos For Freedom, Inc., Assistance Dogs International (ADI), the Hearing Loss Association of America (HLAA), the American Association of People with Disabilities (AAPD), and numerous other organizations, I have met both extroverts and introverts who cope well — and some not so well — with acquired disability.

Some discouraging research does suggest that extroverts are more likely to use assistive technology and devices (Johnson, 1999).

This sucks.

I struggled for so many years with invisible disabilities and challenges, that my “epiphany” moment of changing that… making the invisible very visible, still gives me psychological goosebumps. My introverted life changed when I determined that I would embrace technology and assistive devices. I use bright canes, an assistance dog, bling up my cochlear implant and have informative brochures with me wherever I go. You’ll notice I didn’t say my introverted self became extroverted. I’m aware of and fully accept who I am – an introvert. Yet, using assistive technology and devices (and canine) has dramatically improved mitigating my own disabilities. Extroverts are more likely to seek “tools” early on in a diagnosis that incorporates an acquired disability (Wressle, Samuelsson, 2004; Kintsch & DePaula, 2015). Once introverts determine that the benefit of using assistive technology and devices improves quality of life, they, too, are able to embrace tools that improve life with the downside of making them (perhaps) more noticeable.

In closing, can I just say, “I LOVE PEOPLE”? We are different yet, are alike. We react to things differently and yet similarly. We all love dogs.

Cuz… well, that just makes sense.

Denise Portis

Ellis, A. E. (2003). Personality Type and Participation in Networked Learning Environments. Educational Media International, 40(1/2), 101.

Johnson, D. (1999). Why is assistive technology underused? Library Hi Tech News, (163), 15-17. Retrieved from http://search.proquest.com/docview/201534320?accountid=14872

Kintsch, A., & DePaula, R. (2015). A framework for the adoption of assistive technology. Retrieved on November 24, 2015, from http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.124.3726&rep=rep1&type=pdf

Malec, J. (1985). Personality factors associated with severe traumatic disability. Rehabilitation Psychology, 30(3), 165-172. doi:10.1037/h0091027

Noonan, B. M., Gallor, S. M., Hensler-McGinnis, N. F., Fassinger, R. E., Wang, S., & Goodman, J. (2004). Challenge and Success: A Qualitative Study of the Career Development of Highly Achieving Women With Physical and Sensory Disabilities. Journal Of Counseling Psychology, 51(1), 68-80. doi:10.1037/0022-0167.51.1.68

Wressle, E., & Samuelsson, K. (2004). User satisfaction with mobility assistive devices. Scandinavian Journal Of Occupational Therapy, 11(3), 143-150 8p.

Tree Hugger

Published on April 13, 2015April 13, 2015 by hearingelmo3 Comments

The weather is finally feeling “Spring like”. The trees are all budding out and blooms galore, decorate my neighborhood. It ain’t all good. *achoooo* – but allergies seem a small price to pay for such pretty walking weather.

A couple of days ago, I ventured out of my immediate neighborhood and down a nearby walking trail. I’ve posted about beavers and bullfrogs in other posts as the path stretches along the perimeter of a small pond. At “the bend in the path” where the trail takes a sharp right turn, a huge tree was cut down. This was supposedly done to insure the path remained semi-straight. When I first saw it last year after this section of the trail was finished, I grieved a little seeing that this huge tree was chopped down and for the apparent reason it was hauled away. I haven’t been down this path in months and months. When I got closer to the remains of this giant, I looked for the scarred stump. I was surprised at what I saw. Every which way, new growth and small branches, sprouted from the stump.

I almost became a “tree hugger“. Not in the traditional “activist” sense, but I was so excited to see that it had persevered! I even took a few steps off the path to see how to approach for a hug. Seeing no great way to latch on and SQUEEZE, I instead reached out and calmly high five’d a small branch closest to me. I stood and silently celebrated the fact that this tree was still alive, determined to continue in spite of being chopped down!

Have You Felt the Woodsman’s Axe?

I turn 49 this year. Honestly, growing older doesn’t bother me in the least. Yet, because I have acquired disabilities, I have to admit that where I am is NOT where I thought I’d be. Don’t get wrong.

I feel good about me. I still have goals. I strive to make a difference. I love what I do. I have good days and bad days. There have been days I have really felt cut down.

AXED.

For many with acquired disability, chronic illness or invisible (or visible) conditions, much energy and focus is geared towards being independent. We don’t want to be a “bother” or put people out. I stopped trying to “fit in” a long time ago. I don’t hear normally. I don’t walk or stand normally. As I have become comfortable in my own skin, others have learned to accept me just the way I am as well.

But sometimes? Well, sometimes someone comes by with a wicked, sharp axe and hacks away at me, chipping away at who I am. Do you know what sucks? Sometimes the woodsman is someone I know well. Do you have people in your life who tell you “for your own good” to suck it up? “If you didn’t go around making a big deal about your disabilities, you would fit in better!” “Well aren’t you the DRAMA QUEEN?” “I’d never know something was wrong with you if you didn’t go around with a service dog!” (As if it never occurred to them I’m independent BECAUSE of the service dog).

There will be times we feel “cut down” because it is JUST ONE THING AFTER ANOTHER. I have some friends (those I call family, really) who have significant challenges. A few of them have really had a tough year. One took a significant fall in a store and is STILL recovering as the injury fall out was compounded by her MS. I have another friend with MS who is a stroke survivor. Her husband is now dealing with significant health issues. A young woman I got to know through Fidos For Freedom (who also writes) has a terminal illness and things seemed to go from bad to worse for her this year. These warriors have been chopped away.

Yet people with disabilities and chronic illness are stubborn. We persevere. If anyone “keeps on keeping’ on” it’s us! There is not any person with ANY challenge that cannot explode with new growth in the Spring. Winter is harsh. Axes are sharp. Bad stuff happens. But friends? Life isn’t over. Good can come from this.

Spring is here. Have you had a tough Winter? Did someone take an axe to you? You still matter. You can still make a difference. You are important. It’s Spring. Time to bust out in blooms or branch out in new growth. Don’t make me come fertilize you. 🙂

You meant evil against me, but God meant it for good in order to bring about this present result. Genesis 50:20 (NASB)

Denise Portis

Change and Control

Published on February 22, 2015February 22, 2015 by hearingelmo2 Comments

I’m not a big fan of change. So when faced with a year that is sure to be chock-full of change, I can feel a little overwhelmed. Ok. That’s actually not true.

I can feel freaking terrified, sick to my stomach, near panic attack, bite my nails to the quick, SOMEONE LET ME OFF THIS MERRY-GO-ROUND called life screaming, “abandon ship! abandon ship!”

I’m not even a spontaneous person. My family knows not to ever throw me a “surprise” party. To me ordinary is extraordinary. I just hate change. For me, it’s all about control. That’s right. I’m a bit of a control freak. There is an upside to being a control freak. I am very organized. I’m punctual and responsible. There are, however, all kinds of negative things that come from being a control freak and refusing to accept change too.

I had fairly significant OCD tendencies throughout my childhood and into my early 20’s. As a teen, I developed bulimia nervosa after facing my first big change moving away from home to go to college. Emotionally, I drove some people bananas with my need to control and drove some people AWAY as a young adult.

If you believe everything happens for a REASON and that there is a life lesson to be learned in everything that occurs, one could hypothesize that my developing acquired disabilities was the best (worst) thing to ever happen to me! My hearing loss began at the age of 25 and was a progressive loss. I wasn’t completely deaf until the age of 32 so I had a long time to adjust and cope. Meniere’s disease was diagnosed at the age of 35, though I suspect I had it from my early 20’s. It, too, became progressively worse over time; in part, because of multiple mild concussions. My health issues forced me to change. To remain independent (something I discovered was extremely important to me), I found that I had to work hard at adapting. I had to embrace change instead of shy away from it or pretend it wasn’t happening.

Living with acquired disabilities means something CHANGED. You have to adjust. You have to make choices about how you will cope and how you will treat the diagnosis or disorder. You have to determine how you enlist others to assist – if at all. What adaptive equipment or technologies are available to mitigate the disability? How are you going to mentally and emotionally adjust? (For acquired disability or illness never occurs without having an impact in other areas of WHO you are…)

At the age of 48, I have lived more of my life adjusting to my new limitations than I did to living in a relatively “worry free” life. Here are some things about change that I have learned.

1. Take notice of changes.

This means you have to really get to know yourself. Habitually take your own “pulse” and see how you are doing. Make note of the readings on your “tension thermometer”. How are you sleeping? How are your relationships?

You don’t want change to take you by surprise. One must deliberately brace and expect changes. Be on the look out. Identify health (or mental health) changes.

2. Accept change with a positive attitude.

You cannot stop change, nor control it, but you can change how you react to change. We’ve all see the serenity prayer before. For those of us with acquired disability or illness, however, following these words of wisdom can be very freeing.

God … grant me the serenity
to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.

3. Learn to relax.

Even up-tight control freaks can learn to relax. One of the most important things I learned in vestibular rehab was how to relax when falling. We naturally stiffen up and become tense when we are “on our way down”. I learned to relax my leg muscles so that I immediately dropped to my caboose instead of falling like a tree cut off at the base.

I have also learned to take “me time” every single day and refuse to feel guilty for taking the time to do so. It may be something as simple as looking through a friend’s collection of photographs. It may mean some personal journal time. I might choose to read a good book – that has nothing to do with psychology or my dissertation. I may burn my favorite candle while cuddling with my assistance dog on the floor in the dark.

4. Ask for help.

It took me so long to learn that it didn’t make me weak to ask for help. I chose to be partnered with an assistance dog so that I didn’t have to ask for as MUCH help from other people. In spite of this life-changing decision, I still occasionally have to ask for help. When I do, I don’t apologize first.

“I’m sorry to have to ask you this, but could you help me? I’m so sorry. I hate asking for help, but do need your assistance. I’m sorry I’m bothering you!”

Please don’t ask for help like this. It’s rather pathetic, isn’t it? Yet, we tend to react to even THINKING about help as if asking is something to apologize for when doing the asking. Honestly, most people are glad to help.

If you really have problems asking for assistance, at least learn to ask others “how can I do this task independently?” Brain storm with OTHERS what you can do to remain independent. I have run completely out of ideas about how to do something safely, only to discover through someone ELSE a “brilliant” work-around.

5. You are changing, but you are still You.

Frankly, all of us change as we grow older. The changes may occur physically, emotionally, or mentally. Yes, change may seem more difficult when it occurs as the result of acquired disability or chronic illness, but ya know something? You are actually stronger for it. You had to adjust and perhaps been forced to make changes. The core of who you are does not change. We tend to fear that being “disabled” becomes our new identity. No one signs up for that, and it is never chosen. So when it happens… know that who you are hasn’t changed. If anything you become a better version of you.

One of my favorite quotes about change was written by John Eliot. “As soon as anyone starts telling you to be “realistic,” cross that person off your invitation list.” We can’t avoid negative people. They will cross our path. They will see our being differently-abled as license to give-up and quit. They’ll tell us to be realistic and stop aspiring for “more”. You may not be able to avoid these ~~morons~~ people, but you don’t have to hang out with them on purpose.

So I gear up for a big year of changes for me. I’ll be finishing up my coursework in school, retiring my assistance dog, and face some possible surgery. Those all seem so darn negative, but there’s always two sides to every “coin”. My dissertation awaits – and geesh, but do I love to write or don’t I? I’m retiring Chloe, but I have my close-knit Fidos For Freedom family and friends supporting me with a successor dog eventually entering my life. I hate surgery, but really look forward to getting to the bottom of some of the neurological issues I’ve been having. I can identify and sense these impending changes with a weird sort of relief. I have discovered that change can be good. Relinquishing control can be freeing.

Denise Portis

Accepting Help ≠ Dependence

Published on January 1, 2015 by hearingelmo3 Comments

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

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

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

Ungracious Acceptance

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

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

S c A r Y

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

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

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

Yeah, so? Let’s Go!

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

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

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

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

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

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

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

PUH.

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

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

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

Do you know where I’m going with this?

WHY???????

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

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

Maybe it was a lot of help.

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

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

PRIDE.

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

Denise Portis

It Can Be Small Things…

Published on November 28, 2014November 28, 2014 by hearingelmo4 Comments

Deborah Marcus, friend and photographer, explains, "I love to hear how what I capture and share gets people to notice stuff they'd probably overlook". I have learned much through seeing what she sees through her camera lens. — Deborah Marcus, friend and photographer, explains, “I love to hear how what I capture and share gets people to notice stuff they’d probably overlook”. I have learned much through seeing what she sees through her camera lens.

A dear friend and fellow “hearing again with a CI” friend, Deborah Marcus, has a knack for capturing the kind of photos that has me sucking in my breath and having to pinch myself to remember to continue breathing. She finds the smallest detail and creates a visual memory by “pointing and clicking”. It’s a talent, and one I don’t have. So I enjoy seeing the small things through her camera lens that I would normally miss. Why do I miss them? I’m not looking…

The Problem With Health Challenges

One of the biggest problems with health challenges isn’t pain. It’s not fatigue. It’s not the stigma. It isn’t depression, anxiety, or any other comorbid diagnosis. In the years I’ve lived as a disability advocate, writer, and mentor, the biggest danger of living with chronic health conditions and challenges is that it can make a person extremely self-centered.

It’s easy to do. No one understands except perhaps others we’ve connected with who “live the same”. The people we love may be supportive or stumbling blocks. They may be our biggest advocates, or the pain in our… erm… behind.

Take Deborah’s photo above. Now me? I love daisies and any type of flora that is yellow and white. But ya know? I’d walk right by this flower and only think, “what a pretty flower!” I don’t stop, grow quiet, get down on my knees, and really open my eyes. If I did that more often, I’d see the gorgeous wee bug. (Entomologist, I’m not…)

It can be the small things that make an ordinary moment in time, something to be celebrated. When we become self-focused, it is impossible to see those small things and we miss celebrations.

Pity Parties are still Celebrations

Don’t get me wrong. I believe it is healthy to have a good ol’ pity party from time to time. After all, a party is a celebration … of sorts. ♪♫ It’s my party, and I’ll cry if I want too…♫♪

Learning to adjust to new challenges can be exhausting. Some folks with chronic illness or invisible disabilities may find it very therapeutic and healing to bawl their eyes out (Borchard, 2014). In “7 Good Reasons to Cry Your Eyes Out”, Borchard (2014), explains all the GOOD that can come from a good ol’ pity party.

But self-pity is dangerous and different than an occasional pity party. Self-pity begins and ends with self-focus. When we are entirely focused on ourselves and our own problems and difficulties, we cannot see the small things and miss the celebration. “We are bombarded with opportunities to feel sorry for ourselves” (Smith, 2004, para. 2) and if we become self-focused our camera not only fails to capture the beautiful bug, but we miss the flower as well. As a matter of fact, we may only see the dusty road in front of us as we trudge along feeling sorry for ourselves.

My Life is Hard. Can I Learn to “Really Look” Again?

Life is hard. I have heard from many readers who live with chronic conditions and invisible illness who know that they will wake up with pain and fatigue, stress and anxiety, and go to bed holding hands with the same bed fellows. However, many of these same people have learned that in spite of their circumstances, they can make a difference.

They have set short and long term goals… and are seeing them fulfilled.

They have reached out to mentor and volunteer… forever changing the life of another.

They have learned to adjust and evolve, rolling with the “punches”… teaching others by example and living with courage and perseverance.

They have learned to stop focusing on self… and can see the small things. They are celebrating.

I’m still learning how to do this myself. Believe me, when I reflect on “things we should do”, I’m sitting in the front row of my own classroom. And sometimes, it isn’t fun. Last week we had StRaNgE weather. It was in the mid-70’s one day, and in the low 30’s the next. Sunshine to snowflakes. For folks with Meniere’s disease this means you walk as if strolling on the deck of a ship – IN THE MIDDLE OF A FREAKING HURRICANE.

Rushing from my car to my 11 o’clock class, I was trying to hurry Chloe out of the wind and drizzle and hustle 100 yards into the building. One thing folks with Meniere’s disease do not do well is hustle. Not even with blinged-out cane and service dog. So I slipped on some leaves plastered to the sidewalk and fell on my hip and rolled to my caboose. I sat there a second with Chloe, wagging her tail beside me, perfectly content for a spontaneous pit stop. Since I was already SITTING, I let her go leash length to do her thang. As I moved to get up, my “no slip” (*rolls eyes*) boots slid some leaves out of the way as I struggled to rise. I noticed that the leaves had left perfect “leaf footprints” on the white sidewalk in a beautiful display of “peek-a-boo” gone right. I stood there and said, “well celebrate THAT!” I’m learning to look, and it only took 10 seconds. I remembered that leaf pattern long after my britches dried out. It was worth remembering; worth celebrating.

I hope each of us who live with significant challenges can learn to see the small things. We can only do it if we learn to look and if we take the time to do so. We can only do it if we stop with what is natural – self-focus and self-pity. I believe no human is stronger than those who live with invisible illness and disability. I’m a wimp with little to no ability to see what is right in front of me. If I can learn, you can as well.

Denise Portis

Borchard, T. J. (2014). 7 good reasons to cry your eyes out. Retrieved November 28, 2014, from http://psychcentral.com/blog/archives/2009/06/06/7-good-reasons-to-cry-your-eyes-out/

Smith, R. (2004). Self-pity will destroy you. Retrieved November 28, 2014, from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC437127/

Sometimes? All You Can do is LAUGH

Published on September 22, 2014 by hearingelmo7 Comments

You’d think by now hound dog was accustomed to me bustin’ out into peals of laughter. I’ve done it often enough, after all! But I still take her by surprise sometimes!

I had a “Murphy’s Law” kind of day just recently. One of those days where if something COULD go wrong, it WOULD. Some interesting facts about Murphy’s Law and where it all began, visit this link. “Whatever can go wrong will go wrong”.

Chloe and I were walking one evening and the weather was DIVINE. Hardly any clouds, low humidity, and I had a “pep in my step”. For once, my Meniere’s disease was allowing me to walk at a pretty good clip with very little weaving. When I walk, I talk to my dog. Chloe would probably freak if I took a walk and was totally silent. It helps her pay attention to me, and I throw her name in there from time to time. However, sometimes I’m just…

Yackin’

Yup. Just talkin’ about anything and everything. It helps me to think out loud and I tend to go on and On and ON. I actually said out loud, “Wow, Chloe. Look at how easily I’m walking this evening! No wobbles! Moving along at a good rate! I’m smokin’!”

Chloe gave me this LOOK. Almost as if she anticipated something going wrong after that lofty observation. Within 30 seconds (I kid you NOT), I stumbled on an ornery piece of elevated sidewalk and opened my mouth to shriek (for I do precious little QUIETLY) only to have a bee swoop in my open mouth as I began to fall into a nearby bush. So here I am choking on a bee, trying like crazy to spit it out while being impaled on various twigs and branches of a bush… a ROSE bush – wouldn’t ya know? So thorns grabbing me everywhere. Worse, it was damp earth under the bush thanks to recent rains so when I connected with the ground there was a obvious squishy sound and splat as my hip, knee and foot connected. So there I lay in the mud INSIDE a bush, choking on a bee, covered in thorns, desperately trying to hang on to my leash because Chloe was …

OUT THERE

SOMEWHERE

outside the BUSH.

I laid there a minute trying to go through my Meniere’s “play list” that automatically begins playing after I fall.

It’s a cute little jingle.

I’d share the wonderful lyrics with you so that you can sing along… but frankly I can’t carry a tune in a bucket and it’s one of those songs one whines and sings to oneself. So anyway… I run through the steps.

1. Am I dead?

2. Is anything broken?

3. Where is Chloe?

4. Can I move?

5. Do I need help?

So I was able to answer, No, No, *POINTS – somewhere outside the bush*, Barely, Yes.

I tried to turn to see if I could reach my bag. You know… the one with my cell phone in it that I carry in case of emergency? I can see it just out of reach out *there* near Chloe’s legs.

So… I asked Chloe to fetch the bag for me. She grabbed it up and ducked down to look under the bush at me. What she saw, made her drop her jaw and the bag tumbled back to the ground. Crap. Now my phone is laying outside the bag. So I tell Chloe to “fetch phone” – which is actually easier for her to do as it is something she does several times a day. She grabs the phone, looks down under the branches again to where I lay and squirmed to reach my outstretched hand to give me the phone. Success!

Only… the phone is dead. That’s right, I carry around a phone with a dead battery on walks because it is SO helpful to do that. *rolls eyes*

So I decided that I needed to get out from under the bush. Easier said than done. I’m hung up, slightly injured, dizzy, muddy and on the verge of crying. Not a good combination. I thought, “Oh my gosh. I’m going to have to lay here until somebody walks by to help. How embarrassing! How will I explain this?” I didn’t have to lay there very long before I noticed that Chloe was now snuffling at my hung up hoodie sweatshirt.

TUG. YANK. R…I….P! Unbelievable! She tugged me free!

I rolled to one side to get out from under the bush and was wise enough to sit there a minute. Chloe plopped down and waited for me to “collect myself”. I fall SO OFTEN, if I am able to just go down without hitting my head I consider that a coup. So I checked out all my scratches and now torn clothing and thought that – heck. It could’ve been worse. It HAS been worse. So I started to laugh. Sometimes? All you can do is laugh. Chloe looked at me and just panted and “grinned”. It’s not the first time I’ve sat laughing covered in mud and trying to find the wherewithal to get up and keep going! (Likely won’t be the last time either!)

Can You Laugh at Yourself? Should You?

If you live with an invisible illness, have a disability, or a chronic condition, it can be helpful to learn to laugh at yourself. A great little article about the benefits of laughter can be found HERE.

But if you don’t believe in the power of endorphins or social connectedness, you still should learn to laugh at yourself. At least… that is my opinion. Here are some reasons I have learned to laugh at myself:

1. If I am laughing, it can reduce anxiety that others may feel when my disability pops up and causes me to do something like fall, mishear something, or other “Denise blooper”. Does it matter if someone else’s anxiety is lessened? Well… I don’t want people to feel uncomfortable around me. If I can laugh at myself, hopefully they will learn that I take who I am and my new “life parameters” in stride and am fine with it.

2. It reduces MY anxiety. Endorphins are real. It’s not some kind of borg nanotechnology that only re-routes and fixes sci-fy actresses. I FEEL BETTER after laughing.

3. If I laugh, it really helps me accept myself – just the way I am. You can’t change the unchangeable. I’m a klutz. I’m going to fall. As long as I’m in one piece and don’t have any odd bits of bone poking out anywhere, (Yeah, I know. Right?) laughing at myself helps me just accept what happened. It is MY WAY of embracing my flaws. This is who I am.

3. It helps me put things in perspective. While cackling like a hyena, I can take stock too. My little “jingle” may re-play. Some deep breaths – a mirthful hiccough or two, and I’m good as new!

4. Laughing helps me de-stress. Likely I’m laughing because I just did something that COULD cause me stress. (What if someone saw? Bet this mud will NOT come out of my jeans! Chloe tore my hoodie! I’m never walking again! As a matter of fact I’m just going to sit here on the sidewalk and feel sorry for myself! I’m going to stomp on my phone – when I finally get up. I hate my life! I want my mother… ) Laughing… de-stresses me. I can feel the tension roll off of my shoulders.

So I do believe “laughter is good medicine”. But…

There are perfectly good reasons to take the time to CRY too.

Or Scream.

… but those are best left for another writer to touch on! 😉

Denise Portis

By Association…

Published on September 2, 2014 by hearingelmo6 Comments

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

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