Category: chronic disease

The Last Straw

Published on by hearingelmo7 Comments

last straw

The Last Straw (that broke the camel’s back): The final, additional, small burden that makes the entirety of one’s difficulties unbearable.

Isn’t it interesting that there are so many idioms and colloquial expressions that mean “I’m done”?

The straw that broke the camel’s back (1816)

The last feather breaks the horses back (1829)

The final straw

Hitting a brick wall

Hanging up one’s gloves

The final stroke

I’m sure there are others. I’ve had a heck of a month. No worries – I actually thrive under (some) pressure. However, once in a while each one of us is simply not going to be able to take ONE MORE THING. That ONE MORE THING is often inconsequential and “small” in the grand scheme of things. Perhaps that is why we are so frustrated for breaking under what seems like a “small” thing.

This morning I was stepping off the porch when a “throw your head back to sneeze” came out of nowhere. Just. Like. That. I was horizontal with a teeny, tiny bit of remaining tunnel vision. My ears were roaring. I was nauseous. I had two very concerned service dogs in my face.

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Do you know I sat there and CRIED? I use to cry over everything. I mean, every, little thing! Happy, sad, angry, or confused, I’d unload some stress by crying my eyes out. These days I rarely cry. If I’m crying now, something is seriously wrong, or I have no reserves left and I’m “just done“.

It only lasted a minute or two. With retired neighbors on both sides of me, I can’t sit on the ground wailing very long before I garner some unwanted attention. I chanted to myself, “Suck it up, buttercup!” and struggled back to my feet. I’m sporting a few new bruises, and my pride? Well heck. My pride wasn’t hurt at ALL. When you have Meniere’s disease, pride isn’t crushed in falling, for one falls a lot. Pride is when you KEEP yourself from falling <big grin>

I felt so much better and finished watering the hanging baskets and flowers before making my way back inside. I likely over-analyze things too much. When psychology is your main squeeze, you tend to analyze everything. I took a few minutes to think about why falling on my face and experiencing a short bout of vertigo set me off. I determined it was “the last straw“. Have you ever felt that way when burdened with one more “little” thing?

It is very normal to have days like that. We all have stress. Stress can be good – and bad. Do not confuse stress with burnout. How do you know if you are becoming burnt out? According to the Help Guide organization (2016),

You may be on the road to burnout if:

  • Every day is a bad day.
  • Caring about your work or home life seems like a total waste of energy.
  • You’re exhausted all the time.
  • The majority of your day is spent on tasks you find either mind-numbingly dull or overwhelming.
  • You feel like nothing you do makes a difference or is appreciated.

(para. 6).

I love this chart (for I am a “chart” kind of person). I think it does a terrific job explaining the difference between stress and burnout:

Stress vs. Burnout
Stress
Burnout
Characterized by overengagement Characterized by disengagement
Emotions are overreactive Emotions are blunted
Produces urgency and hyperactivity Produces helplessness and hopelessness
Loss of energy Loss of motivation, ideals, and hope
Leads to anxiety disorders Leads to detachment and depression
Primary damage is physical Primary damage is emotional
May kill you prematurely May make life seem not worth living
Source: Stress and Burnout in Ministry

As you can see, both stress and burnout can be dangerous. Short-term stress, and at times – chronic stress, are a normal part of life. The “last straw” can actually be a good thing if it means you do something to alleviate some stress.

I cried. I hugged my dogs. I over-analyzed to my heart’s content.

However, the “last straw” can also be a prerequisite to something far more dangerous.

So what do you do when you feel your knees buckle and your back breaking? Well the first step in successfully recovering from collapsed camel syndrome is recognition of the problem or problems. Take some time to evaluate where you are at in your life. Are you over-extended? If so, what can be cut out? Start working on de-stressing. What can you take off the back of your camel?

Are you getting enough rest and taking care of yourself by eating right, getting some fresh air and sunshine, and laughing out loud occasionally? If not, make it a priority to do those things. They can strengthen “your back“.

The Help Guide organization explains how we can unload some of the burden on our camel:

Burnout prevention tips

  • Start the day with a relaxing ritual. Rather than jumping out of bed as soon as you wake up, spend at least fifteen minutes meditating, writing in your journal, doing gentle stretches, or reading something that inspires you.
  • Adopt healthy eating, exercising, and sleeping habits. When you eat right, engage in regular physical activity, and get plenty of rest, you have the energy and resilience to deal with life’s hassles and demands.
  • Set boundaries. Don’t overextend yourself. Learn how to say “no” to requests on your time. If you find this difficult, remind yourself that saying “no” allows you to say “yes” to the things that you truly want to do.
  • Take a daily break from technology. Set a time each day when you completely disconnect. Put away your laptop, turn off your phone, and stop checking email.
  • Nourish your creative side. Creativity is a powerful antidote to burnout. Try something new, start a fun project, or resume a favorite hobby. Choose activities that have nothing to do with work.
  • Learn how to manage stress. When you’re on the road to burnout, you may feel helpless. But you have a lot more control over stress than you may think.

(Help Guide.Org, 2016, para. 23).

Finally, acknowledge how incredibly resilient camels are! In Arab cultures, the camel symbolizes patience, tolerance, and endurance. Yes, at times you will need to ask for (and hopefully receive) help. This is a terrific article on finding help: (Where to Begin: Finding Help During Chronic Illness).

camel2

Denise Portis

© 2016 Personal Hearing Loss Journal

Help Guide.Org (2016). Preventing burnout: Signs, symptoms, causes, and coping strategies. Retrieved May 26, 2016, from http://www.helpguide.org/articles/stress/preventing-burnout.htm

When “LIFE” Happens and Your Glass is Half-Full

Published on by hearingelmo6 Comments

glass half full2

One frustration that I often hear from Hearing Elmo readers is that living with a disABILITY or chronic illness is “manageable” if only LIFE itself were a little easier. However, the old adage is true… “Life is hard“. It just is.

I take an unconventional interpretation of the “Glass Half Full” expression. I realize the original meaning is — Are you an optimist or a pessimist? I look at this analogy in a similar way that the “The Spoon Theory” describes energy levels, daily quotas of tasks, etc. For some of us, our glass is never completely full. I wake up first thing in the morning after a good night’s rest, and my glass is half full. Don’t get me wrong… I’m in a good mood. As a matter of fact, I’m one of those annoying “morning people“. I grin ear-to-ear, greet the dogs and take them out, fix my coffee, and eagerly open my calendar to see what the day holds.

Because I have had a hearing loss and Meniere’s disease for over 25 years now, I have learned to manage my time very carefully. I work hard to not “bite off more than I can chew“. The great thing about being an adjunct professor at a community college, I can stretch my 3-4 classes a semester out over the day and week so that I have “down time” for office hours or simply chill time in between classes. I am involved in a number of community service and social justice issues, but I work hard to make sure monthly meetings do not interfere with my “regular scheduled programming” (a.k.a. my LIFE).

Have you noticed, however, that just because you have a disABILITY or chronic illness, LIFE and its occasional sucker punches, still occur? We don’t get special treatment. Just because our glass starts out at the beginning of the day — HALF FULL — doesn’t mean that LIFE and the normal crap that happens within it, will not happen to us as well.

You are going to catch the flu.

You are going to have unexpected car expenses.

Someone is going to hurt your feelings.

You will be treated unfairly.

It is going to rain (and if you live where I do – it will rain a lot).

Your dog is going to be sneaky and eat grass and then surprise you with a present around 2 AM.

You may experience a divorce.

You may become estranged from an adult child or (once) close friend.

You will be accused of something you did not do.

You may be treated with disdain and anger as you navigate your “normal” in a world that does not view you as such.

A doctor is not going to listen to you.

A spouse or significant other is going to get frustrated with you – as if you can change your “normal”.

Your alarm is going to go off and you will want to hurl it through the window.

You will accidentally burn supper.

You are going to trip (and if you have Meniere’s – often!)

You will be misunderstood.

You will lose people you care about and will grieve.

Grief

Last week, my precious father-in-law passed away. My husband and children went to North Carolina and thankfully arrived before he was gone. I stayed home to take care of pets, cover classes for my husband, and “hold down the fort”. Can I just say I hate,  “holding down the fort”?

My family members are home now, and I am grateful I will have the opportunity to attend my father-in-law’s Celebration of Life later this summer.

I am running on EMPTY. This is final exam week and the extra stress that comes with grief and worry for my loved ones has taken a toll. You see… LIFE doesn’t pull any punches. Just because you have a disABILITY or chronic illness, you will still experience the normal things in LIFE that every person does. Losing people we care about is part of LIFE. It sucks. It hurts. It is hard. For those of us with a glass that starts “half full”, it may mean we need to take care to – TAKE CARE.

I normally go to bed between 9-10 PM. This past week I have made an effort to retire between 8-9 PM. We’ve had an excess of rainy weather which causes my balance to really be a trial for me. I am taking extra measures to make sure I change elevations carefully (stairs or bending) and am giving my service dog a serious work-out with various skilled tasks that I can do when my balance is not as wobbly. I’m trying to eat healthy, balanced meals.

Experiencing grief is a normal part of life. It cannot be avoided, and we cannot wish it away. If disABILITY or chronic illness is a new normal for you, I encourage you to prepare in advance for LIFE. We are not granted special privileges just because we have special challenges. So my advice is to do what you can to have a plan in place for when LIFE happens. The plan may include steps to take extra care of yourself. It may mean you make that phone call or send that email to someone you know you can dump on safely and wail or whine to your heart’s content. You may want to make an appointment with a counselor (so have one in advance on standby in the event you need an objective listening ear).

The Benefits

I learned something important over the last week. If I have prepared – as best I can – to absorb life’s normal sucker punches, and take steps to function in spite of a half-full glass, I can still BE THERE for those I care about.

I am not so energy-depleted that I fail to recognize the needs of others. I can support (as best I can) those who are grieving. Because I’m getting extra rest, I can think of small (seemingly) unimportant things that can make a difference in the life of my grieving husband. Like… making Cheeseburger Hamburger Helper for supper (something I cannot even eat but is his major comfort food). I can take on some extra chores around the house to give him the opportunity to have some extra time to grieve either openly or privately. I can be a listening ear (difficult but doable when you have a hearing loss). These simple things would be virtually impossible if I didn’t have a plan.

I am not so naive to believe that having a plan will mean you never have anything take you by surprise. LIFE is really good at surprises – some good and some bad. You cannot prepare and plan for every surprise. I hate to be a downer and fess up that at times I’m just DONE. For whatever reason, I allow hopelessness and despair to rule and reign in my heart and mind. For me, it helps to acknowledge that I’m at the end of myself and need help. It may mean seeking spiritual renewal. I may need to overhaul my schedule. I may need to just experience the YUCK. Sometimes all one can do is wade through and survive. The sun really DOES come out tomorrow. (… and thankfully? my weather forecast for tomorrow really does include SUN).

glass half full1

Denise Portis

© 2016 Personal Hearing Loss Journal

Mindfulness: And the Skies Opened Up

Published on by hearingelmo3 Comments

IMG_2764

I apologize for how long it has been since I have posted anything. I am one week from finishing all my coursework towards my Ph.D. and have been busy working, going to school, and finalizing my dissertation committee. To say I’m exhausted is an understatement. I try to be serious and mindful about how much rest I am getting. I was thinking last week when I turned the big 5-0, that I have now lived longer as a person with disABILITY and chronic illness than I lived without those challenges. It influences what I have chosen to study and what I am passionate about. When you are ABD (All But Dead — just kidding: all but dissertation), you tend to think about your dissertation each and every day. This means that everything I am reading and researching for the literature review of my own work is on my mind each and every day. I even dream about it! “Predictors of Posttraumatic Growth in Persons with Acquired Disability” takes up much of my brain power.

These past few days I have been “chasing a rabbit” (like my retired service dog, Chloe)  and reading published articles on mindfulness as it incorporates one of the major domains of posttraumatic growth. I suppose “mindfulness” started out as a Buddhist tradition; however, in the last 8-9 years, the field of psychology has come to recognize it as a means to treat numerous physical and psychological disorders. In my short personal history of 25+ years, I have learned that folks with acquired physical challenges–whether the result of illness, accident, or genes–also experience comorbid anxiety or mood disorders (Carson, Ringbauer, MacKenzie, Warlow, and Sharpe, 2000; Siegert & Abernathy, 2005; Weintraub, Moberg, Duda, Katz, and Stern, 2004). You do not have to convert to Buddhism to practice mindfulness. Kozlowski (2013), explains that mindfulness has been Westernized by psychology and “it is purposefully devoid of spiritual or religious connotations and focuses simply on the act of awareness. And if you want to take it to a level that we can all relate to and understand, at its core is stress reduction” (para. 5).

You’d think as someone who has worked so hard to hear again, I would rarely purposely “go deaf”. Yet, I have discovered that if I want to do some deep thinking, praying, and just spend some time being aware of all the “stuff” in my life, I have to reach up and click my cochlear implant off. I need the quiet to take the time to be mindful of what is currently stressing me (and how to de-stress), what my priorities are, and how I can make a difference TODAY in the life of someone – ANYONE. My bionic hearing is wonderful, but I cannot focus when my processor is busy – processing. So I “go deaf” – on purpose. I need to reduce distractions. For me that means being alone with my thoughts and perhaps a pad of paper nearby so I can jot things down as I think of them.

Mindfullness & Preparation

Learning to be mindful, meant that I learned to change how I view disABILITY and illness. I learned not just to experience my “new normal”, but to own it. With that acceptance came the understanding that I am able to make a difference in such a way that I would not have been able to had my “normal” not changed. I likely wouldn’t know the people I know. I would not have been drawn to studies about posttraumatic growth. I wouldn’t have chosen to invest my time in student populations of individuals with visible and invisible conditions. My life – that I embrace and love – would not be what it is today.

Learning to be mindful also taught me to prepare. I knew before this ten-day deluge of rain that I was going to have a much tougher time with my balance. I deliberately scheduled an additional hour of sleep each night, made sure I had my cane and service dog equipment ready to go each morning, placed my umbrella and rain boots by the back door, planned where to park to eliminate having to by-pass major puddles of standing water, deliberately stayed where I could see outside to determine when the rain had let up enough to take the service dog out or to make a quick trip to the campus testing center or copy center, and made sure that I allowed extra time to get to where I needed to go each day because I knew my mobility issues would require I traverse slowly and methodically. Even though the sun sets much later now that it is the month of May, I made sure that I had someone to drive me for evening obligations as I knew my vertigo would be worse by day’s end. Being mindful about the forecast and likely changes in my symptoms, meant that I could “hope for the best and prepare for the worst“. A nice little “perk” of Meniere’s disease is that if you learn to recognize the changes, you discover that you are a living, breathing, and walking barometer. (I’m likely more exact that local forecasters).

So… when the skies opened up, and delivered mist & sprinkles, steady, significant amounts of rain, and at times-torrential downpours, I was as ready as I could be! I suppose some folks might think that being so mindful and preparing for worsening symptoms, is the equivalent of being self-centered. I have learned the hard way, however, that if I do not take care of myself, it is impossible for me to take care of anyone else. I MUST take deliberate steps to insure I am prepared for long periods of rain, for example. If I do not, I will be nearly useless to anyone else. I’m not trying to avoid or escape the worsening symptoms I know are to come with a long bout of rainy weather. It is a type of cognitive-restructuring (from the psychologist’s point of view). As a person of faith, I work at being “mindful” of His promises. It helps me to remember He is mindful of me (Psalm 8:4, Psalm 111:5, Psalm 115:12, Romans 8:5-7, Romans 12:2, 1 Corinthians 2: 9-12, 16, Colossians 3:1, and 2 Peter 3:2).

A Long-Term Benefit of Being Mindful

In closing out this post (and greeting a day where the sun has finally breached the dark clouds), I want to share something I’ve learned simply because I really HAVE been at “this” a long time now. When you are mindful, purposefully focus your thoughts, prepare, and live deliberately, you will find that some good habits develop. On about “Day 6” of our recent monsoon-like weather, I came into my 8 AM class and… honestly? I wanted to go sit down and cry. I was tired of the vertigo, tired of the nausea, tired of the wobbling, and tired of the balance corrections. My head hurt and I was cranky. Darn — if it wasn’t only 8 in the morning! After booting up the computer, turning on the projector, and fishing out my lesson plans, I looked up to greet the class a few minutes before “launch”. I always try to ask students by name how things are going for them. I try to really get to know them and let them know I care. I noticed on changing my visual perspective an empty chair of a student who just buried her father. I caught in my peripheral, the quiet entrance of a young man making his usual unobtrusive way to his seat in the back. This young man just found out his cancer has returned for the fourth time. I saw the sleepy, single mamas and the students who took two early morning classes (including mine) before going to work for eight hours. I saw and waved to the student who attends classes, works four hours, and then goes to sit with her husband in a hospice center before staggering to bed each night. All the very temporary “woe is me” disappeared,

Just.

Like.

That.

Mindfulness doesn’t mean I do not have “bad days”. Being mindful, doesn’t mean I will always be in a super, good mood. However, being mindful gives me a better perspective and deeper appreciation for what really matters. I can more quickly rebound from self-pity and look for opportunities to make a difference – even in a sometimes “broken” body and weary mind. Being mindful allows me to wake up to a Milo-bear (service dog) alarm-clock with an attitude of “BRING IT ON“. For me… it makes a difference.

L. Denise Portis

© 2016 Personal Hearing Loss Journal

Carson, A. J., Ringbauer, B., MacKenzie, L., Warlow, C., Sharpe, M. (2000). Neurological disease, emotional disorder, and disability: They are related: A study of 300 consecutive new referrals to a neurology outpatient department. J. Neural Neurosurg Psychiatry, 68:201-206.

Kozlowski, E. (2013). Can Christians Practice Mindfulness? Huffpost Healthy Living. Retrieved May 6, 2016, from http://www.huffingtonpost.com/eden-kozlowski/mindfulness-and-religion_b_3224505.html

Siegert, R. J., Abernethy, D. A. (2005). Depression in multiple sclerosis: A review. J. Neural Neurosurg Psychiatry 76:469-475.

Weintraub, D., Moberg, P., Duda, J., Katz, I., & Stern, M. (2004). Effect of psychiatric and other nonmotor symptoms on disability in Parkinson’s disease. Journal Of The American Geriatrics Society, 52(5), 784-788 5p. doi:10.1111/j.1532-5415.2004.52219.x

 

Use Your Words

Published on by hearingelmo5 Comments

use your words

Not too long ago, I stood in the kitchen with a piece of my kitchen cookware, and dramatically wiggled the (seemingly constant) loose handle.

“Hey, honey,” addressing my husband, “hand me the thingie-majig out of the… (I gestured wildly towards the drawer)… the… the… THINGIE!”

My husband turned to face me and raised his left eyebrow. It was only the left one. You know… the one he raises when I’ve said something truly ridiculous and he’s trying to make a point?

… with an eyebrow? Yeah. That one.

I continued to gesture holding the slightly, heavy pan and sputtered and fumed, not daring to repeat my request, only adding a bit of a head flick towards the… the… THINGIE.

At this point my husband’s raised eyebrow lowered. Instead both eyes grew wide with alarm. Both eyes. You know… the ones he widens in horror when he realizes I truly expect him to read my mind and decipher both thingie-majig and thingie?

“Denise.” (When he pauses like that not only do I know I’m in for a mini-lecture, but it also means it may be deserved).

“You canNOT expect me to actually know what you mean. We’ve been married a long time, but I know thingie-majig, thingie, whatcha-ma-callit, and doo-hickey are interchangeable, obscure references to whatever happens to be going through your brain at the time!”

Do you know I tried to argue with him?

“Terry.” (Cuz, what’s good for the goose is good for the gander).

“I’m holding a pan. I’m jiggling the loose handle. I need to use this pan. The handle is loose. I need a screwdriver. The “thingie-majig” is a screwdriver, of COURSE” (I sighed super loud for a little dramatic effect and continued). “I gestured towards the junk drawer with my eyes, head, and elbow. The drawer is the “thingie”. Now who wouldn’t KNOW THAT?”

His eyes lost their incredulous look.  It was like watching a slideshow of emotions flick over his face.

First anger. (“Is she SERIOUS?”)

Next came a sad effort at stifling his laughter.

Then that lightbulb look. I love this look. It’s a slow-simmer realization that darn it. “Darn it, she’s right! That kinda made SENSE!”

He scratched his head and bent to collect the screwdriver from the bottom junk drawer. “It sucks that what you said made sense”.

I demurely accepted the screwdriver and sweetly…

Kept.

My.

Mouth.

Shut.

… because it didn’t make sense. I didn’t use words! Well, I did… but they weren’t real words. How can I call that communicating effectively?

When We Don’t Use Our Words

When you’ve lived with a chronic illness or disability long enough, the vocabulary associated with it becomes second nature to you. However, it doesn’t become second nature to others. You know all the medical terms and acronyms associated with your “new normal”. You shorten things and abbreviate information with people who really do not completely understand what you are trying to convey.

So… use your words.

  1. Use specifics.

Don’t say, “I can’t hear well”. Instead be specific and offer an alternative that may help.

“I can’t hear well in this cavernous room with so much background noise. Can we step out into the hallway to finish this conversation?”

2. Don’t leave out details that actually assist in expressing your need.

Don’t say, “Will you watch the dogs for me while I talk to mom?” Instead provide some more detail so that your request isn’t unreasonable.

“The dogs are wound up and my mom is trying to FaceTime me. Can you take them outside while I talk to her for a few minutes? I will be able to concentrate and hear her better.”

Don’t say, “Oh my gosh I need to leave right now!” Instead provide the details for your hasty departure so that whomever is accompanying you can make polite excuses and follow you in a more polite way.

“Oh my gosh. The ceiling fans in here are low and are moving in the opposite direction of my inner ‘SPIN’. I need to step out right away”. 

3. Avoid acronyms unless they are truly universal.

A.S.A.P.  – – – Yeah. We all know what this means.

BPPV – – – To most with a balance disorder or Meniere’s disease, we understand this to stand for benign paroxysmal positional vertigo. Few others will know what this is. I have even discovered that within disability groups (types), members will often use acronyms that they think are universal to “us” and they are not. For example in a Meniere’s support group I belong to, the members constantly refer to Meniere’s disease as MD. As a volunteer and participant of a service dog organization that includes a number of mobility challenges, MD stands for Muscular Dystrophy for both myself and many others.

I have been surprised how understood and universal the acronym MS is. Many, many people seem to understand it stands for Multiple Sclerosis. Why is that I wonder? (I’m asking for real responses and not rhetorically!)

4. Don’t use cues unless you have practiced them and both you and your “helper” understand the cue. 

If someone has facial hair or talks behind their hand, I’m likely not comfortable stepping into their personal space to hear them better. I will turn to my husband and touch the corner of my mouth. This means, “What’d he say? Repeat for me please?” We’ve used this FOREVER and it works without any hitches for us now.

I have trouble in places that have huge, open areas, or extremely, high ceilings. I may “look” fine. But if I pick up the vest handle on Milo’s equipment and quietly ask for my husband’s arm, he knows I’m about to do a face plant. If my husband isn’t around, I take Milo’s vest handle and head for the nearest wall so that I may continue with whatever I was doing safely, or talking to whomever I was trying to talk to before my “Woah!” I have never had someone argue with me about moving towards a wall. (I’m pretty sure people would rather move than pick me up off the floor).

5. Complete your thought. Use real words.

Just because you know what you are talking about, doesn’t mean you can voice a sentence fragment.

“Put it over…” 

Put it over where? If the other person wasn’t watching, they do not know where you mean for them to put it.

Recently I got up on a step stool (never a good idea) to dust the ceiling fan blades in the dining room. The fan was OFF, so “color me SURPRISED” when I was hit with a sudden bout of vertigo and actually felt my vision tunnel as I struggled to stay conscious.

“Please! Right now!”, I screeched.

Manners didn’t matter. Specifics about the timeframe were irrelevant. I fell. My husband did hear the fall. Well… he HEARD the screech too, but he simply didn’t know what it meant. It was vague. It could have been meant for the dog who just stole my sock for the fourth time and I was demanding it back. (Hey. It’s happened).

He was horrified he didn’t interpret my call for help for him to actually get his butt there immediately. I hit the carpet and the dogs scattered safely out of the way. Since I didn’t injure anything (dogs included) I could laugh as soon as I made it vertical again. “Well geesh. It’s not like I called your name or explained why I needed you! I should have said, ‘Terry! Come quick!’, right?”

As fond as I am of “thingie-majig”, “thingie”, “doo-hickey”, and “whatcha-ma-callit”, they aren’t words. They stand for whatever word is missing from our immediate working vocabulary. They are stand-ins, and we simply cannot expect someone to make sense of them. When it comes to our challenges and self-advocacy, it makes sense to —

Make Sense.

Use your words.

Be specific.

Use necessary details.

One final word of advice though. Sometimes we work SO hard to be good communicators, we may offer a little too much information. If I throw the acronym at ya, of T.M.I., — does that make sense to you?

Too Much Information. We can blow people away with unnecessary details and specifics.

Several weeks ago I ran into one of my students in the hallway and we were headed in the same direction. He opened the door to the stairwell and I leaned over to hit the elevator call button. He said, “Oh here, let me carry that” and reached for my bag assuming I would be able to take the stairs if someone carried my bag.

I said, “Oh no. I can’t take the stairs. Even though I have Milo it will take me ten minutes to make it up one flight of stairs. I’ll be late for class. I just can’t traverse the stairs safely at top speed. I need to wait for the elevator. I don’t always wobble, or have bad balance days, but I never climb or descend stairs safely”. By the time I finished with my over-zealous answer, he was practically cross-eyed.

“TMI?” I sheepishly asked.

“A little… but we’re cool!” he cheerfully responded. He ended up taking the elevator with Milo and I because we were headed to the same class and were discussing something he was passionate about – projective tests (ugh. Hate them!).

So just be careful about being specific and detailed, without killing someone with unnecessary information.

Denise Portis

© 2016 Personal Hearing Loss Journal

 

 

 

Making the Difference – in ONE

Published on by hearingelmo3 Comments

calf feeding

I grew up on a working farm. I’ve learned to add that “working” part, for after I moved to the “big city” I discovered that many people have what is called a “hobby farm”. I loved growing up on a farm, but can’t say I’ve ever considered it a HOBBY.

Growing up, I had a lot of responsibilities that included various kinds of farm work. Probably one of my least favorite chores was baling alfalfa; in part, because I was highly allergic! Sneeze at the wrong time, and the bale of alfalfa was suddenly on top of you, or worse… several piled up and rolling off the flatbed truck. I can’t tell you how many times my aggravated Daddy had to stop the truck, wait for my siblings and I to reload some scattered bales… all because I sneezed at the wrong time.

One of my favorite responsibilities was feeding the baby calves. We always had some wee calves that required bucket feeding. The picture shown is not my own calf, but it was the same kind of bucket. Now-a-days, buckets are plastic or are big “bottle-shaped thingie-majiggers”. We had these old-fashioned (but serviceable) metal buckets. In the beginning, I hated the chore. If the school bus comes at 7:40, that means all chores had to be done early. I’m talkin’ cock-a-doodle-doo early. I wasn’t a 5 o’clock in the morning kind of kid, and I’m still not that kind of adult.

We used powdered formula for the calves. Some were orphans, some were adopted from feed lots, and some were separated on purpose from mama if the calf was unlucky enough to be born to one of our milkers. The powdered formula smelled horrible. Ugh. We mixed it with hot, HOT water. In this way, by the time we carried the buckets to the barn, it was still warm for the calves. The calves drooled all over the place. Occasionally, they would head-butt the bucket (like they would their mama) and if you weren’t prepared (or had fallen asleep against the fence post), formula went everywhere and you started all over.

I’m not fastidious. I can stand dirt under my fingernails and getting my hands messy. However, returning to the house every morning covered in calf drool and formula, had me grumbling and complaining big time. My dad would let me whine and complain. He is a very quiet guy. When he did open his mouth to talk, we all practically stood in awe to see what he was going to say. It was always rather profound. One morning after listening to me bellyache, he said, “Denise, have you ever thought about how important you are to that calf?”

Well… Dad didn’t expect an answer. He had already walked off. I stood there digesting that though and I must have thought about it the rest of the day. I think I must have thought about it all the way up ’til I went to bed that night. The next morning, I awoke with a new attitude about those calves.

They needed me. They were pretty low on the “totem pole” as far as value on the farm. However, if I didn’t feed them, they were goners. For all intensive purposes, I was their mama. That morning I noticed as I walked out to the barn that the calves were all standing by the fence waiting… for ME. Likely, they always had! However, I was so busy grumblin’ I never noticed. As I set the buckets on the fence to give them one more good stir before turning them around for the hungry bovines, I noticed the calves were mooing softly and actually wagging their tails. They were expectant. They knew they needed me and that I could provide what they needed. I remember throwing my legs up and over the top rail so that I could sit and put my weight on the bucket guards to keep them from being butted to the ground. Now that my attitude was different I was seeing these calves in a whole new light. So… I started singing.

That’s right. I sang to the calves. Over the following eight or nine years, calves heard me bellowing out every 80’s tune I could think of and even some 70’s tunes as well. I sang, and I sang, and I sang. My entire outlook and attitude towards these calves had completely changed because I discovered they needed ME. At this point, you are probably wondering, nice story… but what exactly are you trying to say?

PIVOTAL MOMENTS

I truly believe that it was at that point I realized, even someone like me can make a difference. I was just a young farm girl. I had few aspirations. Yet, even *I* could make a difference – perhaps in the life of something rather lowly (and drooly), but I could still make a difference.

Do you know I believe some of my panic at 25-years-old, with the realization my issues were progressive, was that I was afraid I would no longer be able to make a difference? I’ve been forced to adapt to increasingly progressive “differently-abledness”. However, those early lessons made an impact. A “nobody”, farm girl could make a difference to a calf. Surely, a differently-abled woman could still find a way to make a difference!

Don’t get me wrong… I’m no super hero. As a matter of fact, I cringe a little when someone at work stops me and tells me “You inspire me!” I’m thinkin’, “Girl? I’m no inspiration. I’m ordinary. I’m just me. I didn’t sign up to only hear bionically, and learn to walk a semi-straight line with a vestibular disorder!” Everything about my life is rather ordinary. Sure, I have challenges, but the fact of the matter is, WE ALL DO.

I wake up each morning thinking, “I want to make a difference for ONE, today” (well… and I’m also singing 80’s tunes – some habits die hard). Perhaps this is what “trips up” folks who live with disability or chronic illness. They may have convinced themselves they have to do something rather profound to make a difference. You don’t. You can make a difference with something as ordinary as smiling. Kraut & Johnston (1979) wrote a fascinating article on research they did on unspoken messages and their impact. Smiling is actually an emotion-filled message that you send – perhaps to someone who needs that message.

Guinness (2003) wrote a book, “The Call”. I believe we each have strong, in-born desire to have a purpose. Sometimes, we mistakenly believe we are too broken, too busy, too much of a “farm girl” to have a purpose; to make a difference.

Wrong.

For some reason, folks think they have to impact the world to make a difference. Making a difference, MAKES A DIFFERENCE, even in the life of ONE. Aknin et al., (2013) recently completed some fascinating research pointing to how much good it does an individual to make a difference in the life of one person or in one way. There are physical, psychological, and emotional benefits to making a difference… also called prosocial spending (Aknin et al., 2013). You may feel you have limitations, but having the opportunity and capability of making a difference is not one of them.

This has completely changed my outlook on my own life. I can make a difference.

… and so can you.

I love the lyrics to this song (hey! I warned you earlier I’m an 80’s tunes kind of person). The Oak Ridge Boys got this one right:

Did I Make a Difference?

I’m caught up in the push and shove
The daily grind, burning time, spinning wheels
I wonder what I’m doing here
Day to day, year to year, standing still

Somewhere there’s a teacher with a heart that never quits
Staying after school to help some inner city kids
A mother who’s a volunteer, a soldier in the fight
I can’t help but ask myself when I lay down at night

Did I make a difference in somebody’s life?
What hurts did I heal? What wrongs did I right?
Did I raise my voice in defense of the truth?
Did I lend my hand to the destitute?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?

I’ve been working hard to make a living
And forgetting what true living is
Taking more than giving, something’s missing
Lord, how long can I go on like this?
There’s a lonely old man down the street
And I should be ashamed
I’ve never been to see him, I don’t even know his name
There’s kids without their supper in my own neighborhood
Will I look back someday and say that I did all I could?

Did I make a difference in somebody’s life?
What hurts did I heal? What wrongs did I right?
Did I raise my voice in defense of the truth?
Did I lend my hand to the destitute?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?

When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference? Did I make a difference?

———–

Denise Portis

© 2015 Personal Hearing Loss Journal

Aknin, L. B., Dunn, E. W., Whillans, A. V., Grant, A. M., & Norton, M. I. (2013). Making a difference matters: Impact unlocks the emotional benefits of prosocial spending. Journal of Economic Behavior & Organization 88, (1), 90-95.

Kraut, R. E., & Johnston, R. E. (1979). Social and emotional messages of smiling: An ethological approach. Journal Of Personality And Social Psychology, 37(9), 1539-1553. doi:10.1037/0022-3514.37.9.1539

Where the People Aren’t

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"I Wanna Be Where the People Aren't"
“I Wanna Be Where the People Aren’t”

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

© 2015 Personal Hearing Loss Journal

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.

Pressure Cookers and “The BIG REVEAL”

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pressure cooker

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?

How a Pressure Cooker Works

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.

  1. Raises the boiling point from about 212° to 250°.
  2. Raises the pressure inside the pot and forces moisture into the food.

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:

  1. Taking it to God and recognizing that “He’s got this”.
  2. Learning to ask for help from trusted friends.
  3. Learning to pace yourself; taking the time to rest when needed.
  4. Looking for the GOOD in a very BAD DAY.
  5. Burning your “Blame Game” after recognizing it is no one’s FAULT.

  6. Showing off your “BIG REVEAL”

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.

Denise Portis

©2015 Personal hearing Loss Journal

 

 

Specificity

Published on by hearingelmo4 Comments

specificity

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:

  1. Asking for help
  2. Accepting help
  3. Realizing that assistance ≠ diminished independence

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.

Instead of:

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.

Instead of:

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!)

Instead of:

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.

Instead of:

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.

Instead of:

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:

Instead of:

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.

Denise Portis

© 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! 🙂

How the Church Can Welcome the Differently-Abled

Published on by hearingelmo5 Comments
My husband, Terry and I, standing outside our church on Easter 2015.
My husband, Terry and I, standing outside our church on Easter 2015.

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.

Asking For Guest Authors

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:

Grief Support

Addictions

disAbility Awareness

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.

Denise Portis

©2015 Personal Hearing Loss Journal