April 2016 – Hearing Elmo

— It’s such a treat to have guest writers here at “Hearing Elmo”. I welcome any and all, for we all have a story to tell, a life to share, and a voice. I am glad to offer “Hearing Elmo” as a platform for those voices. I have known Ruth for a little over 14 years. I met her at a national Hearing Loss Association convention, and then continued to touch base with her in various ways. Now we mostly connect through FaceBook and I am always tickled to see her recent photos. Ruth loves nature and has that special talent the really good photographers have–seeing things through their lens that are often overlooked by those of us who don’t stop to LOOK. When my balance issues become my “main issues”, Ruth reached out to encourage me again and again. (I have often wondered if I have been accurately diagnosed as many of my symptoms are atypical of Meniere’s). Ruth is a blessing – and lucky for you and I – a writer. I share a recent piece with you today! —

The abilities of people with chronic health problems are continuously redefined by fluctuations in whatever challenges they have: weakness, stiffness, pain, sensory disturbances, fatigue, endurance, or mental/emotional processing. Loss happens frequently.

Grief is commonly seen as the way to heal loss. In the case of continuous repetitive losses, a person can get caught up in a perpetual circle of grief. Instead of experiencing healing, the overload of negative emotions such as sadness and anger can cause increased physical problems. To maximize health, positive emotions are needed to restore balance.

How does one get from grief to happiness, when experiencing continuous losses? They do so by making a conscious choice to response positively vs negatively to challenges.

For the first fifty plus years of my life, I allowed myself to get caught in the perceptual circle of grief. I reacted to my losses with anger and sadness. I blamed others, from my parents to God, for my life’s challenges. My poor choices nearly destroyed my life.

Most of my challenges came from a genetic disorder called mitochondrial myopathy, a rare form of muscular dystrophy. The core of this disorder is the failure of powerhouses found in each body cell, to produce enough energy to sustain the health of that cell. Where ever these defective cells reside, the reduced energy results in inadequate organ function or even organ failure.

From my toddler years onward, the cells in my inner ears progressively deteriorated and died. By the time I was in my early 20’s, I had a profound loss of hearing. I was a survivor in the sense that I persisted in education until I got to the right career match for a deaf person. However, I failed to maintain a healthy emotional balance and consequently experienced years of profound depression. I was stuck in a perpetual cycle of grief.

As a young adult I began to experience progressive mobility challenges, and the grief cycle intensified. I didn’t take care of myself, physically nor emotionally, and consequently more medical problems surfaced. Finally, in my late 50’s, I slowly learned to focus on the good things that are a part my disability experience: my growing faith in God’s goodness, the love and understanding of my remarkable husband, incredible friendships; the cochlear implant enriching my life with sounds I had never heard; the freedom to participate in life provided by disability accommodations, including the use of my wheelchair. I have learned to see and remember the blessings of good days.

I recently experienced a 6-month miracle in which my mobility limitations almost disappeared. This miracle, which felt like it was here to stay, came to an end. I grieved its loss and the opportunities that ended with it. But now I can look back and smile warmly at the memories, much in the same way a wonderful vacation is remembered. I truly believe that staying positive and the prayers of many people energized my body enough to stop the physical backslide, maintaining about half of the gains I experienced. Though I continue to walk for exercise, it takes twice as long and multiple rests are necessary along the way. My freedom to participate is again dependent on my walker or wheel chair depending on the endurance each situation requires. But, I have learned, in spite of chronic disability and the doors it closes, to rejoice.

Ruth Ilean Fox

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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.

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

Month: April 2016

Rejoicing

Use Your Words

When We Don’t Use Our Words