A specially trained dog can make a huge difference in someone’s life:
Source: Can a dog change someone’s life?
A specially trained dog can make a huge difference in someone’s life:
Source: Can a dog change someone’s life?
Aren’t I brave to post a picture with no make-up on a “horrible, rotten, no-good day”? I decided last minute to stop in at work on Monday to check my mail box. I forget to do it during the summer when I’m not teaching. Anyway, I ran into a person I know fairly well. I almost ran the other direction because I know her well enough that I didn’t want her to see me with no make-up, flip-flops, and blue jeans. However, since SHE had all that going on too… I decided to let her flag me down instead of pretending I didn’t see her. We exchanged the “how’s your summer going?” questions and visited for a few minutes. We’ve served on various committees together and so when she asked me, “So how are you really doing?” I didn’t hesitate to answer truthfully. Silly me, I thought she wanted to know!
“Well, I have had a bad day. I get super tired of falling on rainy days. Ya know? But the weather for the rest of the week looks great” and I beamed my best smile!
She said (I kid you not), “Yeah, I fell this weekend and broke my friggin’ nail. Just look!” (she sticks her finger in my face for easier viewing). “I just got a manicure too!”
Now the first thing that popped into my head wasn’t nice. So I’m not even going to repeat it on here. My second thought, however, was “this is why I’m not honest to people face-to-face“. Besides… if you don’t live with a chronic illness or disability, you just can’t understand what having a bad day for THAT person really means. (I can’t completely understand YOUR bad day either). It’s not their fault. I chose to believe she was trying to commiserate and help in some way. I “ooo’d and aaaah’d” over her broken, manicured nail, getting madder and madder (but doing a fantastic job of hiding it, I might add!)
After due diligence in bemoaning her broken nail, I turned to leave. Since I had been holding her wrist to get a better look at the nail, I dropped my hand (and her hand) as I turned to walk away. It was then she noticed my arm. “Oh my gosh. What did you do to your arm?”
I turned my arm to look at where she was looking and saw a row of purple and blue bruises. “Oh that,” I said breezily, “yeah, I said I fell, right?” Her eyes got really big, and she whooshed out on an astonished breath, “Well, I’m an ASS, aren’t I?”
I giggled. Not at her.
Ok, yes it was AT her, but her self-condemnation and horrified look were truly priceless. I assured her that all was well, working hard to make sure we went our separate ways with friendship and her self-esteem still intact. After all, I didn’t want her to think that *I* thought she was an a**. Even though I did…
On the short drive home I belly-ached out loud to Milo (new Service Dog). One of the great things about service dogs is their non-judgmental, listening ears. When I’m angry, I tend to cry. Not sad tears either. (Hubby has learned to not “there-there” me when he sees tears because chances are he’s in trouble and not that I’m sad and need a shoulder).
Many people with chronic illness and disabilities lie. Not premeditated lying. It’s more of a self-protective omission of the truth. When your NORMAL is not “normal” for people who do not live with significant health challenges, you do not really have symptom-free days. Instead, you learn to appreciate the good days and try super hard not to dwell on the bad days. You don’t ever answer “how are you?” truthfully. (Unless the person who asks lives it too and really gets it). You don’t want to be a negative Nellie; a sour puss; a stick in the mud; __________________ (fill in the blank).
So you dodge the question, or flat out lie. I had a friend tell me that “stating how my day really is going doesn’t make my day better. It only depresses the other person. Since there isn’t anything they can really DO to make it better, I grab FRIENDSHIP by the collar and don’t let go, insisting my day is going very well if only to talk to a friendly face for a few moments longer”.
Don’t get me wrong… we all need some folks we can be honest with and tell it like it is. For me, it is often God because I figure His shoulders are broad enough. Sometimes I need a flesh-and-blood human face to talk, too. This is why I highly recommend support groups. I rely on the people I have come to know at Fidos For Freedom. We couldn’t be any more different. We struggle with completely different kinds of disabilities and challenges, but each one of us understands why we dread the “how are you?” question. Even virtual support (through the medium of the Internet) can be very therapeutic to people with chronic illness and disabilities.
I have a few people in my life (and I hope that you do, too) who I can be honest with when I’m overwhelmed with a “horrible, rotten, no-good day”. They may ask, “how are you really doing?” and I TELL them. The obvious next question is, “Well, what can I do to help?” Ya know? I’ve really wanted to take people up on this before. I mean… sometimes it may be that I need someone to go shopping with me. Milo is terrific, but there are some things he cannot pick up and some things I really wish I hadn’t dropped to start with! (like glass). Shopping is exhausting for me but a necessary chore.
My son has a “temporary disability” as he fell through the ceiling while in the attic and broke his arm. (The full story is much longer, but I’m not going there today). He is really struggling with doing “normal” things because he has one hand. So I asked him, “what can I do to help?”
Laundry. My son asked me to do his laundry! And do you know, I was almost hysterical with JOY? I love to do laundry! I am ABLE to do laundry! I love pre-treating stains, choosing settings on the washer, and piling things in evenly. I love putting wet clothes into the dryer. And… (OMGosh I’m trembling with excitement I can hardly get it out…) I love folding warm clothes from the dryer. I’m getting goosebumps thinking about the neatly folded piles of “like” clothing. It’s a very normal (and for most people), boring task. However, “son” couldn’t do it. *I* could help.
If you are in a position to help someone who lives with chronic illness, doing something rather ordinary — is EXTRAORDINARY for them.
Loading/unloading the dishwasher
Washing the bedding and re-making the bed
Mowing the lawn
Deep-cleaning a bathroom
I know people with various disabilities who do things to help out others with disabilities. That’s how it should be, right? People… just helping PEOPLE.
I have some high maintenance friends. And you know something? I love them. I knew in advance they were high maintenance and I chose to be their friend anyway. I also have some friends who “hold their hand close to their chest”. Heck, if I’m really going to see their “hand”, I almost have to yank them towards me and demand “a real reveal”. I’ve had to learn how to “read” them. I very well may MISS IT sometimes – the clues that tell me that all is not well.
Sometimes people just need to vent. They KNOW you can’t do anything to improve their situation. They KNOW they will have better days (so please? Don’t tell them, “the sun will come out tomorrow”?) They may just need a few moments to tell you like it really is. You say, “How are you?” and they decide to open the dam. It may pour out of them. It may be a trickle of water that you have to give additional encouragement to in order to really break down that barrier.
Let them VENT.
… and then what? I don’t recommend patting them on the shoulder and asking if they feel better. What’s the next step?
It’s two years old now, but I love — absolutely LOVE this advice. <Click here for full article> The highlights and three follow-up (recommended) questions to a “Vent-or” are:
This is listening done right. They vent. You follow-up with questions that let them know you were actually listening. You can brain-storm with them options that may help them with some of the things that are frustrating them. You may discover through dialoguing with them, a way that you can easily help them beyond providing a listening ear.
Folks who live with disabilities or chronic illness like being able to reciprocate, too. I am on CLOUD NINE that my son needs me to do his laundry for him right now. I love dog-sitting for my daughter’s dog when she needs to go out of town. There are some things I can do. Let me do them. :-)
I hope you will look at venting a little differently after reading this. Especially if the venting you listen to is from someone who has significant health challenges. One of my dear friends has a seizure disorder as well as other significant health challenges. She often lets me hear how things are really going because she knows I care. I tell her I will be praying, and she knows I mean it. She immediately asks, “so how can I pray for YOU?” and I know she means it. A praying friend can be HUGE. Sometimes you can do more. I hope you will look for those opportunities. Lysa TerKeurst does a great job blogging about this. Please allow me to share her great article with you: “Don’t Say You’ll Pray for Me“.
© 2015 Personal Hearing Loss Journal
I can hear my grandmother’s voice saying, “Turn up the heat and see what boils out!” None of us like pressure.
None of us enjoy being stressed.
None of us “sign up for” difficult times.
Yet life is full of difficult times. It’s just the way it is. I use to get so aggravated at my mother for responding to my self-pitying tears and hiccup-sobbing announcement that “It’s not FAIR” with, “Denise… life is NOT fair“.
Life isn’t. Bad things happen to good people. Wonderful people suffer. Terrific human beings have their hearts broken.
Sucks, don’t it?
I don’t know of very many people who own a pressure cooker. I don’t use one. I had a grandmother who used one fairly frequently, however. Why use a pressure cooker?
Pressure cookers essentially do two things.
Using the pressure cooker as a great analogy for LIFE, it helps us deal with higher temperatures, and keeps us from DRYING OUT. That’s right. When you are forced to deal with stress and pressures, you actually work out your “dealing with it” muscles and make it easier to handle the next burden. This is especially true if you are dealing with it often enough that you’ve developed good habits. New good habits include:
That’s right. After the burner is turned down and the pressure is OFF, we lift the lid and take our bows. The big reveal.
My former pastor from North Carolina reminded me however, that the “reveal” is often long before we lift that lid.
“The true test of character is not just seen in your actions but your reactions. We often like to excuse our inappropriate behavior by saying, “I’m sorry I was just under a lot of pressure.” But it’s the pressure that often reveals what’s on the inside and what we’re really like!” (Pastor Jake Thornhill)
While we are blowing off steam, we are also revealing to all who watch, who we really are. I have a dear friend who recently lost her young adult daughter in a car accident. As a person of faith, she knows she will see her daughter again one day. Yet, she has been very “real” in blowing off some steam. She is hurting. She misses her daughter. Her faith is strong. She’s dealing with it. However, I repeat: She is hurting. She misses her daughter. It is a poignant reminder to me that the very best people need our love, support, and prayers. Bad things DO happen to good people.
People who live with chronic illness, invisible conditions, or disabilities have good days and bad days. There will be days that you handle “your normal” in a positive, healthy way. There will also be days that you need to go back to bed and zip your lips because everything spewing out is pretty ugly. Not everyone is going to understand that. (Even some folks close to you won’t understand). Want to know some “ol’ sayings” that get on my very last nerve?
“What doesn’t kill you will make you stronger”
“Shine – don’t whine!”
“Be better, not bitter”
“When life hands you lemons, make lemonade!”
If we take these oft-used encouragements too far in our attitude towards OTHERS who are going through tough times, we miss out on one of life’s biggest blessings. One of the quickest ways to alleviate someone else’s stress and pressures are simply to let them know you are there for them. Pray for them. Hug them. Tell them, “I care about you“. If you deliberately look away when life increases the temperature under someone’s pot and assume “this is good for them”, you miss the opportunity to be used in a special way. Throwing a chirpy little positivism at them will not help them. BEING there for them is what matters.
Love someone with significant challenges? You will learn what to SAY, and what NOT to say, to support your loved one best. Please allow me to mangle one more colloquial expression?
“A watched pot never boils”. Oh yes it does. You can stand there and watch the pressure gauge go up and Up and UP on a friend or loved one’s pressure cooker, and it’s going to boil. There is no escaping the heat. I don’t know about you, but I want to be the kind of friend who is there through the cooking process and present for the big “reveal”, for when the pressure is gone and the lid is lifted. That’s what friends do. That’s what support is.
©2015 Personal hearing Loss Journal
Some posts get a lot of response both publically and privately. Back in March of this year, “When they SHOULD, but They Don’t” posted. In 2015, this post has generated the most “mail”. This tells me that the topic is important. This tells me that this problem exists. This tells me that people with chronic illness, invisible illness or disability, and health challenges struggle with:
My husband and I travelled to see his parents two states away this weekend. I love having Terry all to myself in a car where he can’t get away from my enthusiastic chatter and conversation. Thankfully, the man doesn’t seem to mind that a seatbelt is all that separates him from his talkative wife.
I shared with him how much follow-up email I have received about this post. I know many people who are differently-abled personally. I also “know” many only through “Hearing Elmo”. Why is it so hard for the people in our lives to support us in a healthy, loving way without creating codependency, “IOU mentality”, and decreased self-esteem? I shared with my husband an article I recently read at the Invisible Disabilities Association, on what family members of differently-abled people should know. (You can read it HERE).
My husband, a psychologist who has worked with special populations for 25 years, reminded me of something that I really needed to hear. You see… lately we have not been communicating very well. Yeah, yeah, I know! Hearing loss is a communication disorder, but this isn’t new to us! Once in awhile, our communication breaks down. I get frustrated, he gets defensive, and the dogs choose sides. It’s ugly.
Be Specific or Be Quiet
One of the most common things people say to me about this topic is, “If the shoe were on the other foot, and THEY were differently-abled… I would be supportive and accepting!” In other words, “I’m sure I’d respond to all of this much better because I’m a super hero and they are NOT”.
Now don’t get me wrong! Maybe you WOULD respond more effectively! I believe that circumstances such as dealing with a health challenge can make us more compassionate, empathetic, and helpful to others in the same boat. I tried to point out to a reader that they “could not know how they would respond and support the other person because it isn’t their reality”. They “could not know how hard it is to love and support someone 24/7 that is differently-abled because they are not living that life”. These folks immediately fire back, “Well I LIVE WITH THIS 24/7 so I think I would know how hard it is”. Apples and oranges, my friends! They are both fruits and grow on trees, but are different in every way. Bottom line, if you are differently-abled or live with chronic illness, your perceptions and reality have changed. You cannot know what it would be like to be completely healthy and instead love/support someone who has special challenges.
I can already HEAR picture some of you freaking out about this. Before you send me hate mail though, please remember that I, too, am a person with special challenges, married to someone whose only significant challenge is to lose 20 pounds now that he’s middle-aged. (Hmmm. I may get called out for that comment should hubby read this week’s post).
I’ve already explained that my “captive audience” reminded me of something about good communication because I have slipped into some old habits and was feeling frustrated with him as a result. We need to be specific. Our loved ones are not mind readers. Here are some REAL specifics I have learned in my own communication – all of which we re-visited on this trip since communication has broken down lately.
You need your laundry done? Do it yourself MORON!
You know I love doing laundry. I need you to carry it down the two flights of stairs to the laundry room. Then, when you get home from work, at some point I will need you to carry it all back upstairs.
What? You can’t carry your own plate to the sink? Well I guess I’m making dinner FOR ONE from now on, You MORON!
I don’t mind cleaning up after meals. My Meniere’s disease does not allow me to carry things to the sink very safely. Could you pile your stuff in the sink please?
(This specific instruction garnered the benefit of his carrying MY dishes to the sink, too!)
I can only walk one dog at night. You think I have excess energy? I guess poor Chloe is going to believe she is unloved and definitely UNWALKED. MORON!
Would you walk Chloe with Milo and I tonight? She needs the exercise. You don’t need to go as far as I do, and it will mean a lot to her.
You’re tired of the empty cupboards and fridge? Go get your own groceries, MORON!
(Can you tell my unfiltered, “go to” cut-down is moron? Poor Terry)
I am running on empty this week. Milo is a huge help, but I’m just “done”. Would you go get groceries with me this week? It would really help.
You never help me! (and just to stay consistent… MORON!)
Would you mind helping me with some housework today? My balance is particularly bad. I could dust if you would vacuum?
Specificity helps communication. Generalizations will lead to communication breakdown. It takes practice. You wouldn’t think it would, but it really does. Learn to be specific. You may even have to learn to be specific in how you want your loved ones to back off! A recent example:
Cripes, Terry! I can do this, you know. I’m not totally incapable!
(He was trying to help me get Milo’s leash on and Milo was super excited).
I know Milo is “blowing a gasket” here. But I have to learn to calm him down and give him the proper commands since I’m usually alone with him. He has to learn to settle on MY terms. Thanks for the help, but I’ve got this!
If you need help, be specific. If you can do something yourself, be specific. If you need a listening ear, be specific. If you need a hug, be specific.
© 2015 Personal Hearing Loss Journal
P.S. I’m hoping to launch a series of blog posts over the next year. See HERE for more information. We need guest authors! :-)
Do you know how many times polygamy has cropped up in my conversations? It’s super easy for me to hazard a guess because I have NEVER had a conversation about polygamy. I don’t watch “Sister Wives”, and know very few Mormons (and those I do – do not practice polygamy). So why… WHY would I bring the word up in a chance encounter? *shaking my head at myself*
I’m a creature of habit. I go to the same stores and the same restaurants. I’m super scheduled and my electronic calendar is near and dear to my heart. I’m color-coded. I’m organized.
Therefore, it’s no surprise that I tend to run into the same people at the places I frequent. I have shopped at the same grocery store for almost four years. You tend to run into some of the same people when you frequent a store. When you go everyplace with a service dog, it makes you rather unforgettable, especially with children. It’s no surprise that I see some of the same children in stores who have been curious about and thrilled with Chloe as I shop.
It shouldn’t have surprised me that a little boy I have seen a half a dozen times or more stopped me to ask about my dog. My new partner is Milo, a black shepherd/lab whose appearance is completely different than that of Chloe. Here is a recent photo of both Chloe (retired) and Milo (current). The picture isn’t that great which reminds me I need to work on getting some more “3 musketeers” shots!
This little boy that I see occasionally (whose name I DO NOT know – which embarrasses me as he knows my service dog’s name), looked at me with big eyes and said, “Where is Chloe and WHO IS THAT?” (Ya gotta love kids)
I replied, “Oh, this is my new service dog, Milo. Chloe is retired now and is at home sleeping on the couch”.
He looked very solemn and said, “So she still lives with you?”
“Oh yes“, I said. “She will always live with me. It’s just that Milo is my new partner!”
He was quiet for a second or two and said, “So it’s like you are divorced and Milo is your new service dog?”
I was so astonished by the seemingly change in topic I stuttered out, “Well… ummm…. no, not at all. Chloe and I aren’t divorced. I guess it’s more like polygamy and both dogs live with me now!”
The little guy look TOTALLY CONFUSED, and I glanced up to see the HORRIFIED LOOK on his mother’s face. Ever want to just slap your hand over your mouth? I knew as soon as I said it that it was 1) totally inappropriate, 2) would take the mother all day to explain to her son, and 3) completely “off the wall”.
I made a mess of trying to back peddle (for people with balance disorders can do precious little BACKWARDS), and hurriedly made my way down the next aisle.
I stood in the international food section fussin’ at myself and nearly in tears for using such a poor analogy around a 6-year-old. I determined then and there I needed to PrAcTiCe PrAcTiCe PRACTICE what to say in response to “where’s Chloe and who is THIS?”
Being a good advocate and representative of “whatever ails ya” means you have good responses when someone asks questions. I have learned the HARD WAY, that these responses need to be rehearsed. When you are taken by surprise by either well-meaning, curious people or rude, snarky trouble-makers, you want to have a measured, helpful reply so that you advocate in a positive and helpful manner. I have found that if I don’t have a “canned response”, I tend to match the tone and demeanor of the person asking. This means that sometimes I am pleasant and in “teacher mode”, with great responses that educate and advocate on behalf of the disability community. However, other times I’m waving my cane in a curmudgeon’s face and informing them in no-uncertain terms how horrible they are.
At Fidos For Freedom, Inc., (where I trained for now – TWO – service dogs), we practice how to respond when encountering access issues. If you have a service dog, it is not a matter of IF you have access issues, rather WHEN you have access issues. It is easy to get flustered. It is easy to get mad. It is easy to say the wrong thing. Practice makes it much easier to respond with something that will actually help you and others like yourself.
What is even harder is when the person acting incredulous and skeptical is someone you know well or are even family. I’m lucky that I have a very supportive spouse and adult children. Even so… it is hard to love someone with a chronic condition. Once in awhile, my husband (or kids) do not filter what they are saying, because they, too, are sick and tired of Meniere’s disease. I’m 100% certain my husband has rehearsed responses to commiserate appropriately so that he doesn’t spend the night on the couch.
(Holding an ice pack on my cheek, or head), “I’m so tired of falling and staggering around! What I wouldn’t give for just one day of no vertigo!”
“It must suck, honey!” is the rehearsed response so that “Yeah, I’m getting tired of taking off work to take you to the E.R.” doesn’t slip out.
It can really hurt when someone who knows you better than others “opens their mouth and inserts foot”. I recommend that even support people practice and learn how to deliver sympathy and encouragement.
Even if you practice measured, helpful responses to personal questions, you are still going to blow it from time to time. A couple of Sundays ago I was ticked off at myself for not responding kindly to someone and was thinking, “Denise! You’ve had this diagnosis for 2 decades! Exactly WHEN is it gonna become HABIT?”
I sit during the worship service. It isn’t because I cannot stand. Folks are surprised when they learn that at work, I stay standing for very long periods of time. I actually MOVE very easily and with very little wobble. It’s standing still that is the problem. My world turns… counter-clockwise when I’m standing still. I love my church. They are very supportive of people who are differently-abled. We have a loop system in the auditorium for people with hearing loss. We have fully accessible bathrooms and classrooms. We have an elevator and a lift for people with mobility issues. In spite of this, I’m forced to sit during the worship service. My church puts the words to the songs on the wall using a projector. We have a beautiful stage and lights as well. The song lyrics are in a multi-media slide show with patterns, colors, movement and lights. Everything is color-coordinated and changes song to song. The freaky OCD person in me is in awe every Sunday. It’s gorgeous! But… I can’t stand. If I do, I’m fighting consciousness. It isn’t a problem, for I don’t mind sitting. I’m comfortable and SAFE. I learned that not everyone understands why I’m sitting, however.
An elderly person came up to me at the beginning of the service and asked me how to access the hearing loop in the auditorium. I removed my cochlear implant and hearing aid and demonstrated how to switch to t-coil. I get this question about once a month and I’m always glad to educate. I love the hearing loop and it has dramatically transformed church for me. I love answering questions to help others access this wonderful technology. So wasn’t I surprised by the encounter, but totally floored by the follow-up question:
“So why are you seated during the music? I’m way older than you and even I can stand!”
I don’t know if it was the environment, the timing, or the unexpectedness of the question, but can I tell you … I really took it wrong? I could FEEL the tension creep up my spine and I was mentally counting to ten and trying to diffuse the explosion about to spew out of my mouth. THIS ONE I hadn’t practiced for. I hadn’t run any scenarios through my head and out through my heart filter to answer a question like this appropriately. So I didn’t.
“Wow. That was really, really mean. We’re done,” I said. The person looked startled, then uncomfortable and walked away. I think the last action was because I’m certain my look was murderous. I mean… I was MAD. (I later apologized).
Folks are gonna take you by surprise once in awhile. You will hear an insensitive comment from someone you weren’t expecting it from and it will just shock you into silence (if you are lucky) or cause you to say something you regret. It is best to be prepared.
Maybe you are thinking that if people are going to be insensitive and inconsiderate, that “why should I temper what I say in response?”
Since we are on the subject… here are some “canned responses”:
1. You don’t want to sink to their level.
2. You need to be the mature one.
3. Kill ’em with kindness.
4. In the end, you advocate for all of us.
5. Honey attracts more bees than vinegar.
I happen to love vinegar. I mean… don’t get me started on pickles. There are few things I love more. Let’s be honest though… from someone who is differently-abled to someone who may also live with acquired disability, chronic illness, or invisible issues, “WHY should we be careful in our response?”
Because it’s the RIGHT thing to do. Sucks, don’t it? I can tell you from experience though that it is much better to answer correctly and watch someone else squirm, than to have to apologize for “going off” on someone. Go practice, my friends! You’ll be glad you did!
© 2015 Personal Hearing Loss Journal
After a great deal of thought and preparation, I decided to reach out and ask for help.
Ok. Really I’m BEGGING.
(Well that sounds sappy and depressing).
I’ll pay you MONEY. I’ll have your BABY. I’ll CLEAN your house. I’ll OWE YOU. I’ll toot YOUR HORN (but I warn you… I’m deaf). I’ll GIVE YOU PROPS.
Hmmm. None of those are doing it for me.
I’m asking you to HELP. You CAN MAKE A DIFFERENCE.
As a person of faith, and a person who is differently-abled, being able to attend my home church is important to me. My church does a lot of things right. My church could do some things better. I have learned to accept that some things are just HARD when you put everything that encapsulates ME in the place I have CHOSEN to worship.
However, I am a person with hearing loss, hearing again through the bionics of a cochlear implant. That’s pretty specific.
I am a person with Meniere’s disease, a balance disorder that the “experts” have not completely figured out yet. The triggers, symptoms, and treatments vary. How it affects me is very specific.
I have major depressive disorder. Many people do.
I have a service dog. Not everyone who is “differently-abled” has chosen to partner with one. You may have other assistive devices or options.
I know, however, that there are many, MANY people out there who struggle in their own PLACE of worship. There are people who struggle worshiping along side of the PEOPLE with whom they have chosen to worship. These people are different than “my church family people”. There are people out there who have passion for Purple. (Sorry… I got carried away with having a third point that started with P. Did I mention I also have OCD tendencies?)
I would like to ask for YOUR help. You see? I need your stories and your words. Together, the compilation of our experiences (I believe) can make a difference in our churches. I am launching an initiative that I hope will take MONTHS to complete. There is no hurry. The posts do not have to be consecutive.
You can write anonymously.
You can write unedited.
I need you. I believe those trying to improve accommodations and accessibility in places of worship need to hear your story. Would you be willing to participate?
Some ground rules:
1. Email me at denise.portis@gmail for suggestions as far as photographs, word count, etc.
– OR – Click this link: <ThIs HeRe LiNk> (When you are a transplanted Southerner, it shows up even in your hyperlinks).
2. The story needs to be YOUR story. In other words, you live a life as a differently-abled person. Or, you LOVE a differently-abled person and because of your relationship have an important voice about this topic.
3. My assumption is the posts will trickle in over the course of months (maybe a year! I can HOPE!). I will tag them with “Churches and Disabilities”.
Do you have an invisible illness and struggle with accessibility, acceptance, and inclusion?
Are you differently-abled, and wish some minor (or major) changes could be made to make it easier for you to attend your church?
Do you have a mental illness or diagnosis that is misunderstood and has the kind of stigma that a church pretends doesn’t exist?
Do you long for support groups hosted by area churches for:
Parents of Differently-abled Children
“Single Again” Care
Why not consider writing about it?
It doesn’t matter if you have never written for a blog before. You don’t have to consider yourself a “writer”. Hearing Elmo needs YOUR STORIES. I truly believe it will make a difference.
©2015 Personal Hearing Loss Journal
Many of Hearing Elmo’s readers know that I retired my service dog, Chloe, this year. Since May 1st, she is enjoying retirement and still does some hearing alerts at home. She is happy, spoiled, and we believe well-deserving of all the naps and belly rubs she is currently receiving. I was recently matched with Milo, from Fidos For Freedom, Inc. Milo is a shepherd/lab mix and I am enjoying the process of being partnered with a mobility/balance service dog versus a hearing/balance assistance dog. We determined my primary needs are mitigating issues with Meniere’s disease and not hearing alerts. I love my cochlear implant, and feel like I have adjusted to the world of “hearing again” very well. My balance is, and will continue to be, a major issue. I suppose in a way, this is an introduction of my new partner, Milo.
One thing I have enjoyed is experiencing MY world (work, church, walks, etc.) through the eyes of a newbie. For Milo, everything in MY world is new. He looks at everything in awe. If he isn’t looking in awe, he is sometimes in “investigation mode”.
Is it scary?
Is it freaky?
Is it edible?
Is it alive?
What does Denise think?
At a training session with my trainer a week or so ago, I brought Milo to one of my classes. I had allowed enough time to exit the service dog safely from my car. I had allowed time for a short potty break. (Honestly, Chloe hasn’t been at home long enough for me to get out of the habit of some of these things. I found myself at a potty area recently and realized I didn’t have a dog by my side!). I allowed enough time. Not.
I did not allow time for all the new things my newbie partner was seeing. The grassy area was new. The trees and picnic bench were new. The ramp into the building was new. The automatic door push-button was new. At least… it was new to MILO. For just a brief second, I was mildly annoyed. I had not allowed time for appraising all of these new environments. That was MY bad, not Milo’s. I want my dog to be confident and aware of his surroundings. I was almost late to class, but the time I took “extra” was time worth taking. Newbies need some extra patience from those of us who are veterans to the schedule and environment. We owe it to them. But you know something?
I really know how to blow it. I mean, I don’t do anything half-way. This isn’t always a good thing. I recently became extremely exasperated with someone relatively new to “hearing again”. I try hard to be a positive advocate for people with disabilities, and chronic and/or invisible illnesses. This blog is, in part, a way that I try to raise awareness and encourage people to talk about tough subjects.
I see this lady about 3 times a month at the grocery store. Over a year ago she saw my CI, asked about it, and eventually had surgery herself. This individual was relatively new to hearing loss. She was still struggling to help the people important to her understand that the CI did not “FIX” her hearing. Instead it was restored to a type of hearing (bionically) and she would still be in environments occasionally where she would need others to understand that she needed to 1) see their face, 2) slow them down, and 3) find a quieter spot. After listening to her for about ten minutes – really distraught about not feeling accepted – I felt myself becoming impatient. We had this conversation before and I felt as if we were “beating a dead horse”. Remorse and shame immediately washed over me. I stuck my finger in my own face and preached, “Really, Denise? Really?” (Y’all are trying to figure out how you stick your own finger in your face, aren’t you?)
As I had (thankfully) kept my mouth shut, I continued to listen and realized she was now apologizing… “I’m sorry I keep bringing this up. I just can’t seem to help them understand that the CI was not a CURE. I’m so frustrated!”
I realized then and there that I needed to put myself in newbie shoes more often and remember how difficult those early years were. Advocating and educating take time. Families and friends do not just wake up overnight and suddenly “get it”.
I told her that I often forget how hard those early years were, and that she had to keep at it… eventually some of it would start to sink in for her family members.
As a person of faith, I believe everything happens for a reason. We may not always like the purpose behind God allowing something to happen, but there is always a reason. I’m also (gulp) old enough now to know that we may not EVER completely understand why something happened this side of Heaven. I have ALWAYS felt like that the acquired disabilities I have were allowed so that I could help others… or at least try to do so. I blow it. I blow it BIG. However, I think those of us that have lived the life a few years, owe it to the newbies in our lives, to lovingly coach, encourage, cheerlead, advise, and HUG often.
You are going to have newbies in YOUR life. Unless you are isolating yourself, you will have folks new to whatever “ails ya”. People will look to you for understanding and advice. You will be able to empathize much better than their doctor, their families, and their co-workers. Of all people – YOU get it.
Are you looking for a way to invest your life in someone with similar challenges? There are opportunities everywhere. You simply need to know where to look. Urban areas often have face-to-face support groups for various illnesses and disabilities. There are numerous online support networks, discussion forums, and peer supports. Many doctor’s offices and rehabilitation specialists have contacts to support personnel. Invest yourself in the life of a newbie. Remind yourself while investing how difficult those first years were! It shouldn’t surprise you to discover, sometimes by accident, the student becomes the teacher. Always, always be teachable.
© 2015 Personal Hearing Loss Journal
Self-talk. Chances are you have been using self-talk since you were a child. As a matter of fact, developmental psychologists tells us that self-talk begins in middle childhood, ages 6 to 11-years-old (Arnett, 2013). Perhaps that is why many folks think that simply “talking to yourself” out loud is the same thing as self-talk. Children often “play out loud”, adding sound effects, conversations, and even lengthy monologue within imaginary play. This is not self-talk. Self-talk is really just your inner voice. It often reflects your conscious and unconscious thoughts, beliefs, and assumptions (Psych Central, 2015).
Self-talk CAN be out loud… don’t get me wrong. One of my favorite things to practically shout when I use self-talk, is “Girl? I REJECT THAT!” This is said out loud, with southern accent, hand on hip, and oozing with attitude. (Are you picturing it? If you know me, you likely have even heard me say it).
Self-talk is also studied in Sport Psychology. As a matter of fact, if you do some searching online, many athletes have often used quotes that incorporate the use of self-talk. We ALL use self-talk, however. Whitbourne (2013), explained “Psychologists have identified one important type of these inner monologues as “self-talk,” in which you provide opinions and evaluations on what you’re doing as you’re doing it. You can think of self-talk as the inner voice equivalent of sports announcers commenting on a player’s successes or failures on the playing field” (para. 1).
This is why sometimes internally and oft-times out loud, we say, “Well. That was stupid”. As a matter of fact, much of our self-talk as adults is negative. Some of us may be parroting things we actually hear others say. However, most of the negative self-talk comes from the heart of pessimism and self-deprecation. Why? Why are we so hard on ourselves?
People who live with chronic illness, or invisible (or visible) disabilities often have negative self-talk. Statistics tell us we don’t really engage in negative self-talk more than adults who do not struggle with these issues, but perhaps the source is different. Frustration tends to be a significant source of negative self-talk for the differently-abled.
Perhaps you are trying to discover how to do something independently. Maybe your are coming to terms with having to do something differently. Here are some things I have found helpful when I find frustration is spawning negative self-talk:
1. Identify it. Perhaps this is why the first phrase out of mouth is often “Girl? I REJECT THAT”. I identify that I am engaging in negative self-talk. See it (or hear it). Call it what it is. Now that you recognize it:
2. Change your spin on it. See if you can’t put a positive spin on it. Perhaps your self-talk has recognized something that you need to pay attention to but you need to say it like you are talking to your best friend. Be your own best friend. We wouldn’t say, “Geesh, that was dumb”. Try re-phrasing it. “Well I’m smarter than this. How can I make sure this doesn’t happen again?”
A great example of this happened to me just last week. I took a really hard fall between my front door and the grass to “potty the dogs”. It was late, and pretty dark outside. I was in a hurry. My pillow was calling out to me and I wanted to reply face-to-face. I left the house without my cane. I was only walking 10 yards. What could happen?
I have 6 bruises and a small cut on my arm to show how wonderfully intelligent that choice was. So laying there in the grass with “mother earth” in my mouth, ear, and eyes, my first thought was:
“Dang. You are so graceful”.
Yeah. I speak fluent sarcasm.
My second thought was, “Geesh, that was stupid”. I’m a bit of a motor-mouth so I’m pretty sure the conversation went on a little longer, discussing how many brain cells I have, could I be any lazier for not taking 10 seconds to grab the cane?, and competing very hard to convince all living things listening that I deserve my title of Accident Prone Queen.
Because I’ve had so much practice at this, I immediately identified what was happening. Putting a new spin on it meant I could say, “Well this is why you should take 10 seconds to grab the cane!” Folks, I was WRONG to leave the house without my cane. But finding a middle-ground and re-phrasing the self-talk helped me be just a little more kind to myself. We need to take the time to be kind to ourselves.
3. Flexible expectations. No one knows you like YOU know you. If you have lived with invisible illness or disability for any length of time at all, you know what your own limitations are.
Unlike some of my cochlear implant friends, I still do not hear music very well, nor enjoy what I hear. My iTunes account could be deactivated. Does this mean music isn’t a part of my life? Absolutely not. I sing 80’s tunes at the top of my lungs when home alone.
Because of positional vertigo, I cannot use exercise equipment like the cross trainer (my husband’s favorite), stair-climber, or anything that moves my position vertically. Does this mean I cannot exercise? No. I can use a treadmill and I can walk. The latter I do twice a day.
The doctoral program I am in is designed to push you through in two years. I will be done in 3.5 years. And you know what? That is OK. This is the pace I can do successfully and complete my schooling. I can be flexible in my expectations!
When all else fails, tell yourself to shut up. You may not say, “Girl? I REJECT THAT!”, but don’t be afraid to tell yourself to zip it. It may even be helpful to say it out loud. It works for me! In the end, you can actually work self-talk to your advantage. Learn to cheerlead yourself. Most of us look great with poms-poms.
Arnett, J. (2013). Developmental Psychology: A cultural approach (1st ed.). Upper Saddle River, NJ: Pearson Education, Inc.
Psych Central (2015). Challenging negative self-talk. Retrieved June 15, 2015, from http://psychcentral.com/lib/challenging-negative-self-talk/
Whitbourne, S. K. (2013). Make your self-talk work for you. Psychology Today. Retrieved June 15, 2015, from https://www.psychologytoday.com/blog/fulfillment-any-age/201309/make-your-self-talk-work-you
© 2015 Personal Hearing Loss Journal
I work as an adjunct professor at a local community college. This year I was thrilled to participate on the “Year of Social Justice” committee and to head up one of the major activities for the year – “disABILITY for a Day”. The students were given 5 disabilities to choose from, and were to experience a day of class rotation with the chosen disability. We limited the options because we did not want students (for example) choosing a mental illness and inadvertently feeding the stigma of various diagnosis. The students were to then answer 10 response questions and write an essay about the experience; or, create a video segment on their experience. If a student had a disability or invisible illness, they could do the activity “as their norm” or choose something different.
I received a number of finished products from some of my own students, some of whom I had no idea had a disability or invisible illness, and a few that I did. With permission, I am sharing part of that response (and leaving out names and identifiable descriptions).
While I consider myself a person with invisible disabilities (profound hearing loss/hearing again bionically, and Meniere’s disease), I have worked very hard to make the invisible – VISIBLE. I learned in my late 20’s, that it served in my favor for people to recognize that I did not hear normally nor move normally. I do this by “BLINGing up” my cochlear implant, using a brightly-colored cane, and going about my daily life with a service dog by my side.
Although I have “been out of the closet” for years, there are more subtle things that I do not even realize are an influence for others who are struggling. I’m open about my challenges and actually have to work hard at not using too many personal illustrations throughout my lectures. (It’s one thing to educate your students about the disability community, and another to overwhelm them with details).
When I stumble, I usually say, “Woah!” and then grin super big and ask “would you like to see the rest of the dance?” I giggle at myself. Genuine, embarrassing/snorting giggles. If I turn too quickly towards the white board and slam into it, cheek first, I would have a spiffy comeback sometimes such as “ouch… up close and personal”. At times I would simply say, “Crap. It’s gonna be one of those days”. My students knew when I was having a particularly bad day because I would sit during most of the class, or simply announce that I was going to limit motion today (so please come to ME-smile).
One day in class, I reached to pick up a paper clip that I did NOT want Chloe to retrieve and fell on my face to the floor. Several students were there in seconds lending me a hand to resume my vertical stance. After hearing a couple of times, “Geez, professor. Ask for help”, I learned that I could ask for assistance when my service dog could not do so safely, and no one minded at all! I work hard at being transparent. I simply didn’t realize how well students with disabilities could see right through some of the “stuff” I used to advocate in a positive way.
I had a student this semester with visible disabilities, hidden and covered up to make them as invisible as possible. The student sat on the front row and wore a hoodie the first couple of weeks of class. It hid her face and her torso. I saw a transformation in this student in only four months. It wasn’t until the “disABILITY for a Day” assignments were turned in that I understood the why behind the change.
By the end of the semester, the hoodie was gone, she sported sparkly jewelry that actually drew attention to some of her challenges. She smiled (and golly did she have the most beautiful smile). She talked to everyone in her vicinity in the classroom. I saw students come up and hug her at the end of the semester and exchange phone numbers. The following is part of what she shared:
I always tried to hide my disability. In public I would cover up as much of me as possible. My face could be seen and I’d smile when someone looked at me. I would never allow them to look to long. In reality, I was broken, scared and even scarred. I have a professor who embraces all that she is, disabilities and all. I’ve seen her put other people’s unease at rest. She cracks up at herself. When she is having a bad day, she says so but continues to do her thing and teach. She never makes us feel sorry for her on her bad days. I’m not sure how she does it because one thing I hate is pity. Maybe it is because she is real when she is having a good day or bad day. I’ve heard her use the words “differently-abled”. She says she borrows it from a lady she knows with incredible courage and strength who lives with significant challenges. I don’t know why I’m 19 and only now figuring out that I’m differently-abled and not disabled. I have now learned to tell my family or close friends that I’m in pain or having a bad day. I don’t let it drag me down though. I have really good days, too. I’ve even learned how to put on make-up with one hand. Yay, me! There are two sides of me, and I like both sides.
I don’t share any of this to “toot my own horn”. As a matter of fact, I’ve made so many mistakes. For example, I had a student ask me this last semester, “Are you OK, today?” “Sure,” I replied with false sincerity. “Bull****”, they replied.
I share this post today for one reason only. You often aren’t aware of your own influence.
Do you have a tough life? Be genuine, but live as if you are being watched. Be real, be transparent, but remember that someone somewhere is taking notes.
“Denise, you have no freaking idea what it is like. You have plenty of support. You have a job. You have friends”.
Yes. I hear from disgruntled readers from time to time that I cannot understand what it is like to experience the hardships they face. They are right. Their challenges are not my own. I know that I do NOT always have good support and feel alone. I have a job, but it is really hard to go to work some days. I have friends, but only a few that I could actually say, “please help me”. I don’t want anyone to ever think that I do it right all the time. If I was perfectly at ease with who I am and comfortable in my own skin, I wouldn’t be seeing a counselor twice a month. I have major depressive disorder and it is very closely linked with my disabilities. I do not want anyone to think I do not struggle – for I do. My motto is “I have disabilities; my disabilities do not have me”.
Live your life – that’s right, the one that is often TOUGH – as if someone was watching.
©2015 Personal Hearing Loss Journal
We had a brief spat of rain this past week. When that happens I’m at risk for a “brief splat”. Folks? I think I’m more reliable than the Weather Channel. Seriously.
I’m like a human barometer. If it is going to rain, I know it. My vestibular system goes haywire, the tinnitus increases, and my world spins much faster than it normally does. So on a rainy day this past week, I was in class and took a very quick, very unwise turn from the whiteboard to face the class.
I actually have no idea why I didn’t fall. Call it luck. Maybe it was God. Perhaps I’m just THAT GOOD. However, just because I didn’t fall doesn’t mean I didn’t “bust a move”. As a matter of fact, it takes quite the “fancy footwork” to correct a near fall.
I stood there for a minute, with my arms stretched out to aid in my balance correction. I know my eyes were as wide as saucers. I actually heard my breath HITCH. (And if *I* heard it, it must have been VERY LOUD). I may not be able to move fast, but I think fast. I immediately thought, “Ok. How do I explain this? Do I cover with a counter-move?”
I pictured myself launching right into the MOONWALK, and prophesied I’d end up on my fanny.
I pictured myself STAYIN’ ALIVE, but this was long before THEIR time. Instead I decided to just lower my arms slowly and calmly say, “WHEW!”
A student in the front row nonchalantly said, “You should charge for that. Seriously. It’s that good”. Everyone laughed and the tension was broken. Professor Portis didn’t land on her face…
If you have an invisible illness or disability that sometimes has your body doing things you wish it didn’t do, you’ve likely tried to think of ways to explain it to others when it happens.
I have a friend with a neurological disorder which causes her extremities to sometimes “twitch”. If she is fatigued and having a “bad day”, she may twitch very violently. I’ve learned to give her a little bit of space so that I do not accidentally get “hit”. I’ve known her awhile, however. Other folks who aren’t use to being around her, may experience a “near miss”. She cracks me up with her practiced come-backs.
“You should see what I can do on a dance floor!”
These are coping mechanisms. Not everyone tries to laugh it off and poke fun at themselves. Some folks ignore it. Some folks just apologize (like it’s their fault? Wha…?) Some people don’t even try. They isolate themselves so that they aren’t put in a position to have to explain anything.
Some of the best things ever said to me about my disabilities came out of the mouth of babes — children! I get so cracked up sometimes that it is all I can do to bend down to take the time to explain.
I’ll never forget when a kiddo pointed to Chloe in vest and asked, “Why does that dog have on a SADDLE?”
Sometimes OTHER people help me out. They help me explain to children what is going on. The Costco I go to on occasion know me now simply because folks start recognizing my service dog. One day I was in the freezer section and had to pass a more narrow opening to the aisle due to two cooking stations set up at the end. My balance wasn’t great that day, so I decided to just hang on to the cart and walk on through. The Costco deli representative had better ideas.
“Here, you’ve got to try this. It is really good!” She stuck a toothpick in a piece of meat that she had just fried up in her Wok. I shouldn’t have done it, but I reached for that toothpick.
Yup, I almost fell face first into the Wok. The lady grabbed my elbow and continued to extol the virtues of the seasoned meat.
A child nearby exclaimed with horror in their voice, “Dad! That lady almost fell in that cooker!”
The Costco worker, without missing a beat, said, “No worries. I caught her. We’re not frying up that kind of meat today”. Everyone laughed and numerous folks moved their carts clear so I could get through with giant cart and service dog in heel. I wasn’t the least bit embarrassed. I’m glad when people can tell that I am comfortable enough with being ME, that I don’t mind a little humorous dialogue.
Humor doesn’t explain away everything. Laughing at yourself doesn’t always succeed at helping others feel more comfortable. Sometimes, all you can do is state the facts and move on.
I am sporting a big cut on my left thumb. It is healing and my nail is finally growing back. I acquired this injury as the result of cutting an apple with a paring knife on a day I wasn’t being extra cognizant of the fact that I have peripheral neuropathy. I was in class the day of the “big cut”. A student asked, after pointing to the huge bandage on my thumb, “what in the world happened to your thumb”? I explained how I got my “boo-boo” and the student stated the obvious. “Maybe you should get someone else to cut your apple!” I laughed and agreed, but have to tell you… I was peeved for a minute. I mean, I work SO HARD at being independent! I can’t even cut my own apple safely. I was still in a peeved mood when I went for my neurologist check up that afternoon. This was a re-check after the March 8th concussion. It was supposed to be a quick “in and out”.
I was still peeved. After checking everything out, I told Dr. S. “Listen. I’ve had vestibular rehab. I use a service dog. I have my cane with me all the time. I walk with a helmet now on bad weather days. I never wear socks. I alert family members when I’m headed to the shower. I don’t drive at night. I drop things all the time, and cheerfully allow my retired dog to retrieve things if she’s there, or without shame, ask for assistance when she isn’t. You’ve got to help me! I can’t even cut an apple!” I exclaimed while gesturing towards my injured thumb.
I’m sure Dr. S. has heard exasperated – even desperate demands for an answer all too often. He sat there a minute digesting all I said. I have a feeling that after all the tests have been run and all efforts at rehabilitation are exhausted, his response is at times, “I’ve got nuthin’”
However, he got a lightbulb look on his face and turned to his computer. He typed something in and then turned the screen so that I could see it.
Ah. An apple slicer. I bought one at Target that very weekend.
If something is difficult for you and you need a “work around“, brain-storm with a doctor, friend, or family member. Perhaps there IS a way you can do – whatever it is you are having trouble doing – safely! I think asking for opinions help others understand that you really are striving to be independent, too.
SYTYCD (A television show called, “So You Think You Can Dance“),
if you use humor to help educate and advocate,
if you speak in plain terms to help others understand,
or if you get a bright idea from another source… simply celebrate the fact that you found a new AND SAFE way of doing things. A positive attitude goes a long way!
© 2015 Personal Hearing Loss Journal