“It’s Just Lack of Sleep…”

 

When I was in college I adopted horrendous study habits that included “all nighters” and cramming. I also began to nap. I needed them. Between work study at the campus library and going to school full-time, naps were a coveted, hard-earned prize. I felt better after a nap. I could think better, got along better with my roommates, and could better survive the next long night of studying.

My children are 11 months a part. (No… it was not planned that way!) I did various “odd jobs” throughout their childhood so that I could stay home with them when they were babies, toddlers, and pre-schoolers. Thankfully, this meant I could nap at the same time they did. Let me tell you nap time may have been a thing of dread for a precocious three-year-old, but they were a luxury I enjoyed! I used a baby monitor even after my kids were not babies so that I could sleep with my good ear on it in order to make sure they stayed in their beds for their naps.

Darn it. My kids grew up and my part-time jobs began insuring I would no longer have a nap. I miss them still. I may not get a nap anymore, but I do make it a priority to get a good night’s rest. There is no magic number for hours of sleep necessary for an adult to function optimally. According to the National Sleep Foundation, sleep needs are individual; however, experts agree that healthy adults need 7 to 8 hours every night without risking accumulation of sleep debt (National Sleep Foundation, 2010). You may be slack-jawed having just read that. What adult consistently gets 7-8 hours of sleep every night? Few do.

According to the 2008 Morbidity and Mortality Report, 29% of all American adults report sleeping less than seven hours a night habitually. The report clearly stated that, “The importance of chronic sleep insufficiency is under-recognized as a public health problem, despite being associated with numerous physical and mental health problems, injury, loss of productivity, and mortality” (MMWR, 2008, p. 1175). So if we know we need more sleep, but don’t make it a priority… what is really at risk? Actually… a lot. Depression, heart disease, injury at work or when driving, and risk of DEATH may result from habitually losing sleep.

Factor in Invisible Illness or Disability

Let’s say you have an invisible illness or disability. You may argue (albeit weakly) that you get as much rest as other adults you know. I heard a mother with severe hearing loss complain of rarely getting a good night’s rest, “… in spite of being completely deaf at night without the hearing aids. It’s a matter of getting to bed and going to sleep. So much to do!” You may not realize that if you are operating with an invisible illness or disability you actually need more sleep. Don’t take my word for it. Lack of sleep may seriously impact the quality of life of a person with hearing loss (Preminger & Meeks, 2010). I have met people with Fibromyalgia, Chronic Fatigue Syndrome, MS, brain injury, PTSD, hearing loss, balance disorders, and paralysis who have all shared that they do not get as much sleep as they really need to live their best life.

For some, it may be that they are trying but chronic pain or discomfort may limit how much sleep they are able to get each night. For MANY, however, they simply do not take into account that they need more sleep than the average adult. Why do we make excuses for not making sleep a priority? If a doctor told you that you will feel better and perform better if you could make it a priority to get 2 to 3 more hours of sleep each night, would you do it? “Doctor’s orders”? If research and word-of-mouth testimonies give two thumbs up to getting more sleep, why do we ignore this?

I get 8 hours of sleep every single night – and sometimes I get nine! I’m no saint, but honey? Let me tell you I am ALL DEVIL if I do not get enough rest. It is beyond being grouchy too. I’m more insecure because I don’t hear as well. I fall more and sport pretty, but painful bruises. I don’t make time to exercise if I’m tired. My heart needs to exercise. I have a propensity towards depression when I don’t get regular aerobic exercise. My tinnitus is worse. I say “HUH?” more. (Honestly, I do!) Those who know me well… know how poorly I function when I do not get enough sleep. I lack the finesse of it being a cumulative effect too. Instead it shows up immediately. One of the most unselfish, “good for me” things that I do for myself is make 8 hours of sleep a night a priority. It’s a MUST in my daily schedule.

How about you? Do you get enough sleep? I have never met anyone that couldn’t re-arrange LIFE in order to prioritize sleep if they really chose to do so. It is a little embarassing the things we cut out of our life in order to make a good night’s rest a priority. You may cut out things like less time on FaceBook, or surfing the net, or channel surfing on television. If you live with an invisible illness or disability, how about trying a little test. For one month, really strive to get at least 8 hours of sleep each night. Journal about how you feel and about the steps you took in order to make sleep a priority. Ask others if they notice any changes in behavior, over all mood, and performance. You just may be surprised how important sleep is to even YOU.

Do you know you need more sleep but simply cannot find those hours? Talk to your doctor about whether or not you have a comorbid sleep disorder in conjunction with your illness/disability diagnosis. It is not uncommon to have difficulties going to sleep and STAYING asleep when you struggle with other issues.

I’m interested in your feedback! Have you found getting more (or less) sleep impacts your disability?

Denise Portis

© 2011 Personal Hearing Loss Journal

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Are sleepy workers a threat to safety, productivity?. (2009). Occupational Health Management, 19(2), 20-21. Retrieved from EBSCOhost.

National Sleep Foundation (2010). How much sleep do we really need? Retrieved August 22, 2011, from http://www.sleepfoundation.org/article/how-sleep-works/how-much-sleep-do-we-really-need

Perceived insufficient rest or sleep among adults — United States, 2008. (2009). MMWR: Morbidity & Mortality Weekly Report, 58(42), 1175-1179. Retrieved from EBSCOhost.

Preminger, J., & Meeks, S. (2010). The influence of mood on the perception of hearing-loss related quality of life in people with hearing loss and their significant others. International Journal of Audiology, 49(4), 263-271. doi:10.3109/14992020903311396

Who Is That Person?

The bathroom downstairs is decorated with cats. Lots of them. (Yes I know… decorating a bathroom with “cat stuff” is unusual, but it is what my cat-loving children picked out!). The above picture hangs in the bathroom near the sink. As a result, I’ve given a lot of thought to this painting!

Who IS that?

This morning I was getting ready and caught sight of myself in the mirror. I had already fixed my hair, put on my make-up and “made pretty”. Yet, I was taken by surprise at what I saw in my reflection.

It’s raining today. We really need it too. Yet… I really dread rainy days. I usually know it’s raining even before I roll out of bed in the morning. I get this “sense” that all is not right. Weather systems do a number on my balance and I walk like a drunken sailor if bad weather prevails for more than a day or two. Looking at my reflection I could see IT on my face. Fatigue, dread, worry, and acceptance of the unavoidable. There it was in the reflection in the mirror. You would have to really know me to notice. Something in the eyes… tension in the facial muscles. Since I know myself pretty well (grin)… I could spot it right away.

Am I Defined or REFINED by Acquired Disability

The people I find most difficult to be around are those who “knew me when”. Folks who grew up with me – my parents, siblings, and family members – have a hard time being around me I think. I’m not who I was. My family are spread out all over the United States. We are currently in four different states, and unfortunately this necessitates rather infrequent visits. (Thank goodness for Facebook, email and SKYPE so that we can at least touch base virtually). My immediate family (husband and children) transitioned along with me as my life gradually changed from “what was” to “what is”. It seemed less like CHANGE to them, for life changes gradually grew who they were as well. However, when you haven’t seen someone in a very long time and then have the opportunity to be with them, changes are not only obvious they can be surprising!

I’ll never forget shortly after receiving my bionics and cochlear implant, I was visiting my sister while I was in Texas on business. I reached up to remove my CI to hand it to her so she could look at it because she seemed a trifle intimidated by it. She screeched, and said, “No, NO! Don’t take it off!” I got the impression she thought I was going to remove it from my brain or something! As if removing it meant you could peer down into the cavity of my skull! Her grimace and horror at what I was trying to do really threw me off! At first I was REALLY hurt (I’ll just be honest here). I couldn’t believe that in something so life changing for ME, that someone this close to me had done so little investigation themselves about what my having a cochlear implant would mean. But honestly? Researching and finding out more information about the CI that would change MY life is not HER job. I should continue to be the best DENISE I can be, using whatever means necessary to “do a good job” at that. It isn’t her job to completely understand what that transition will look like nor to completely understand the technologies I use to cope and HOPE.

Adaptation is “A change by which an organism or species becomes better suited to its environment” . My family and I have made adaptations. I don’t believe my disability DEFINES me, but it’s ridiculous to pretend it isn’t part of who I am now. I do believe it REFINES me. This isn’t a NEGATIVE thing. I’m still me… but a BETTER me because of the things I’ve adapted to as the result of having an acquired disability.

But sometimes… like this morning… I do a double-take when I see IT in the reflection of the mirror. I suppose it’s because there are days – thankfully few and far between – where my hearing loss and Meniere’s disease get the best of me. It would be so easy to just turn around and crawl back into bed. Heck! Honestly? There are days that would be the WISEST thing to do! I think of the people I know who are living with Lyme disease, Chronic Fatigue Syndrome, Fibromyalgia, MS, HIV, or cancer. Invisible disabilities and chronic illness that, unless you knew the background and testimony of the person standing in front of you, one would never know the courage it takes to live life each and every day with some semblance of normalcy.

Standing and looking in the mirror – you may notice a little bit of IT peeking out at you from time to time. I walked away from the mirror this morning totally OK with the fact that the stress of my life was showing a bit in my reflection. I don’t have to let how I FEEL influence the way I BEHAVE. Frankly? I think every person has days they have to try a little harder to PUT ON A HAPPY FACE. They don’t have to be people who live with invisible disabilities. It’s normal to have bad days. And normal? Well… that’s just exactly how I want to be.

I’ll leave you with a super song that I discovered long ago when that animated movie “Mulan” first came out in 1998. It wasn’t until I saw the lyrics for the first time that it was really driven home – the truths of reflection for every woman, every person, every individual living with invisible disabilities or chronic disease. When will my reflection show, who I am inside?

Truthfully it shows every single day. You just have to look harder on some days than on others. I don’t ever stop being ME though. I usually walk away from the mirror pretty satisfied with the evidence of things not seen on the surface. May we all be great reflections of who we are INSIDE

Denise Portis

© 2010 Personal Hearing Loss Journal

People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.”(Elisabeth Kubler-Ross)

Not-So-Fun Life Lessons on Vacation

A little morphine will put a smile on the face of most anyone!

Kyersten is a frequent guest writer at Hearing Elmo. She is a KODA and has participated in HLAA, Walk4Hearing, and Fidos For Freedom activities most of her life. She is a junior in college and is majoring in Psychology.

Okay, I’m really, really stubborn

Being someone who hates doctors and hospitals, I pretended nothing was wrong for almost a week. After all, if you pretend it isn’t there, it doesn’t exist right? Besides, you’re not supposed to get sick on vacation, that’s no fun.

But pretty soon I knew that I had, I decided, the stomach flu. So I went to the urgent care in my grandparent’s town. Or rather, one of them, because being a city of retired folk, they have about a million urgent cares.

After running a urine test and blood test (blech), the doctor discovered my white blood cell count was dangerously high. SOME stomach flu. They decided to give me an IV. Or, at least they suggested it…at first.

“No thanks, I don’t want an IV,” I smiled.

“Well, we need to give these medications, and it’s best through the IV,” explained a nurse.

“No, I’ll just take a pill,” I replied, smiling but firm.

“No, we’re going to have to put an IV in there,” said the nurse, smiling but firm.

“No I really don’t want it, just give me some pills, I’ll go pick them up at the pharmacy,” I said, slightly more desperate. The nurse pursed his lips. He was cute and a fireman…but married with twins, so a total loss there. He was just the enemy who wanted to stick the needle in me.

“Okay, well, you have to go get my grandma first. NOW.” I said. (All of my 20-year-old independence was out the window when it came to a needle!) I needed grandma, and I needed her NOW.

Thankfully my practical grandma calmed me somewhat and they were able to give me an IV, into which they slid medications and fluids into my body. Ooooo morphine. The world looked more amusing and less painful. But the morphine didn’t keep me from panicking somewhat when they decided to send me for a CT scan at a local imaging place. SOME stomach flu this was!

Deciding that perhaps I was wrong about the whole stomach flu thing…

After drinking 2 large bottles of nasty poisoned Gatorade (they claimed it was because of the dye mixed into the Gatorade), I was led to a back room.

The technician looked about my age. I was slightly suspicious how much experience he had. He led me to a room to change into some unflattering and itchy clothing. After waiting for a bit, I was led to the Machine.

“Now, this machine is going to take pictures of your insides,” he explained. I wondered how old he thought I was….I was getting a lot of “you look 16” comments recently.

“Oooh, can I put them on Facebook?” I asked, trying to lighten the mood.

“I supposed you can request a CD of the electronic versions of the pictures,” he replied seriously. Okay-y-y. (No sense of humor!)

The CT scan was boring and the technician bossy.

“Breathe in…hold your breath. Breathe out. Breathe in. Hold your breath. Breathe out”. Over…and over….and over….and over. I wondered if this really was taking pictures of my insides or was trying to calm me down from the harrowing IV experience (which, if I may say, was still in my arm. I was pretending it wasn’t there though).

I was sent to the waiting room. They called the fireman nurse and doctor. Pretty soon they called me up front. The fireman nurse was on the phone.

“You’re going to have to go to the hospital immediately. I was able to get a bed for you,” he said. He explained the process of getting there.

I nodded obediently as if he could see me, my rebellion rather withered. I assumed at this point it probably wasn’t stomach flu.

“Okay, I’m going to go get some stuff first,” I said politely.

“No…you need to go NOW,” Well okay then.

Well, this is all very…new…and…well, uncomfortable

So I went. I called my parents, who I had been keeping updated. I texted my brother to tell him I loved him. And I mentally prepared myself for surgery.

And then I waited.

And waited.

And waited.

They decided they needed to do more tests.

The first test they decided to do they quickly concluded they could not do because I am a virgin. They were very peeved. I almost apologized even.

“I’m really sorry I’m not like so many other young people nowadays and haven’t lost my virginity several times over by now!” On second thought, no, I was proud of the fact I was a virgin.

So instead they did an ultrasound. Wait just a minute, didn’t they just establish I was a virgin? So why exactly are they doing an ultrasound? But no, there are apparently other reasons to do an ultrasound. Grandma was completely fascinated. I was just uncomfortable.

Late that night Mom and Chloe arrived, both were tired but very happy to see me. My grandparents went home and I was knocked out by some sleep medication while Mom kept watch by my bedside in the hospital.

I was comforted by her presence and she said I kept reaching out towards her in the night, to reassure myself she was there. You’ll always need your mom.

Tests, tests, and more tests…and I never even got a grade

Kyersten needed a "Chloe hug" once the morphine kicked in...

The next day was filled with more tests, including an MRI. The MRI was probably the highlight of my hospital stay… if there could be a highlight. The MRI technician looked like a mad scientist and he was absolutely hilarious. The MRI itself was kind of cozy, and he actually had to wake me up once. I felt rested after the scans.

After all the tests, including so many blood tests that I lost count, it was time for them to consider what to do, because they were really not sure what was wrong with me. They did another blood test to once again confirm that I wasn’t pregnant (as though the two ultrasounds, the urine test, the blood tests, and oh yeah…the fact I am a VIRGIN, wasn’t enough to confirm!)

Wednesday was the day. I wasn’t scared of the surgery, I was in too much agonizing pain to care. I had never before felt such pain and I hope I never do again. A terrible migraine hit me on top of my stomach pains. Then, my IV decided to try to burst my veins; thankfully, the skilled nurses got it out in time. Unfortunately they had trouble finding a new vein and dug around in my left hand for awhile before moving to my right arm.

A story of being in a whole buncha pain…oh and experiencing being “high”

That time was the worst part of the hospital stay, all I could do was lie on the bed and sob, feeling like a complete baby and wanting so so so badly to be home. My amazing Grandma and Mom were there, answering tears in their eyes. At one point Mom left to talk to a nurse and my Grandma prayed for me…which I needed to hear because all I could pray was “please God please please, please God”.

The nurse, in desperation, gave me a new medication which made me very….well….high.

“I think my words are messed up,” I gasped. I stumbled, shaking as if I was having a seizure to the bathroom and back to the bed.

“I can’t talk, my words are gone,” I moaned in confusion. Mom and Grandma were whispering, used to trying to keep quiet because of the migraine.

“Please don’t whisper….your lips smack together more,” I complained. My poor long-suffering family!

They finally wheeled me down to be prepped for surgery and I did feel a bit nervous. The pain, however,  was over-riding everything else again. The weird pain medicine had worn off. A nurse’s humming drove me insane, as did the loud talking of the nurses around. I really wanted to be in a quiet hole somewhere. Mom asked the nurses to quiet down (bless her wonderful, protective heart), and most of them did, except the loud humming one.

She gave me papers to sign. I apologized for my clumsiness, saying I was not left-handed (the IV and various wires were on my right arm). She snapped at me to use the other arm then. I meekly admitted I needed to use the bathroom.

She ripped the different cords off me (I had spent some moments trying to see if I could change my heart rate, before the headache returned…it was fun!) and took me to the bathroom, hooking my IV on the door, and leaving me. I was terrified someone would open the door and pull the IV out, so I hurried. Barely able to even lower myself to toilet by myself, I half-crawled to the door and yelled for help. I was definitely learning humility! Another, kinder, nurse came and helped me.

Going under the knife…and having little cameras looking inside my body….weird

Then it was a blur, I was wheeled to the room, and after prepping me a little more, I waited for the countdown.

And woke up in recovery.

“I have to pee,” I cried. I was assured I didn’t need to. I sat there whimpering for a few minutes about not being able to see (my eyesight was blurry) before I gained control of myself and calmed down. I felt kind of silly when I realized how much I had been crying. Now I was just confused. I squinted around me. I had no idea what happened in the surgery. The hospital doctor came by and seemed truly pleased to see me. He explained that my appendix had ruptured, they removed it, and cleaned up the infection. Ewwww. Eventually I was wheeled up to my room, I was happy to see my nurses and family, in a very drugged-out foggy way.

The time where I felt like Frankenstein

After another couple of days of recovery, which all seemed like a blur, a surgeon came in to look at my wounds. I watched them uncovered the bandages.

“Oh it looks so good!” he said. I almost screamed…or passed out, I was still deciding which to do before he left. Nine terrible looking staples were stuck in my stomach. I decided I was having a nightmare.

“What is that?”, I whimpered. My mom comforted me and explained the fact I had staples, not stitches. I felt absolutely horrified. I decided to pretend they weren’t there. (I was getting good at denial. It can be psychologically healthy sometimes).

The drug-induced blurred ending of the story…they put me on a lot of medications

The next few days consisted of different milestones. Leaving the hospital… sleeping a lot at my grandparent’s home… going to the airport… setting off the metal detector with my staples… flying home… being pushed through the airport by a speed demon wheelchair “pusher”… and finally arriving home alive. (All of course in a drug-induced stupor).

What I Learned…oh the joy of life lessons

Yes, it wasn’t the best vacation but my pain and suffering eventually stopped. There was a fix. It eventually slowed and I became stronger and felt better each day. In spite of the trauma of events, it was just a “blip” in my life.

I was forced to think about my friends and family who do NOT have a “fix” for their physical problems. I thought of how the doctors at first were skeptical that something was terribly wrong. During the exploratory surgery, I finally had proof something was wrong. (Even though my appendix wasn’t where it was suppose to be… I knew I was special).

I have friends with Lyme disease who do not have “proof” of their illness and are treated with skepticism. I can now understand … in a small way… what they go through and not having a doctor listen to you. It made me appreciate those emotional trials they go through in addition to their physical ones.

I thought about my friends and family with disabilities and illnesses that have no cure. At the times I was tempted to feel sorry for myself (and yeah! I may have given in and had a pity party or two), I thought of the fact that there was a light at the end of the tunnel for ME. It made me appreciate the bravery of those who live each day with no “light at the end of the tunnel”. They still live life to the fullest. I know they have times of weakness and maybe a pity party or two. But they live each day with the strength and bravery that I can never imagine having myself. Pain and helplessness (doing simple tasks like using the restroom), makes common life tasks more challenging. I never fully appreciated what those with chronic illness and disabilities go through each and every day. It helped me go through my small trial of physical pain and helplessness…I thought of these people and felt motivated to keep at it, to be strong. I am awed by their strength. From this experience… I now have new heroes. Those who overcome physical challenges every day.

Kyersten Diane Portis

20-year-old Guest Writer to Hearing Elmo

© 2010 Personal Hearing Loss Journal


For Our Own Good

A dog with a cone that is not FREAKING OUT

Chloe was injured on May 9th and it has been a LONG road to recovery. She had surgery following the accident to save a toe, lost 4 toenails… and it has been “3 steps forward and 2 steps back” ever since! Our biggest problem was getting her to leave the surgical site alone. Chloe is very smart. Chloe has been trained by the best. Chloe attends Fidos For Freedom for follow-up training and polishing. But Chloe? Well… she’s still a DOG. We were given a very nice cone similar to the one in the picture above. The only problem was that Chloe would go BERSERK when I put it on her. During the day, I could simply keep an eye on her while I was working at my desk. However, at night I needed a little assistance. The CONE was suppose to be my assistance. Every time we put the “cone of shame” (a line from the animated movie UP!), she went crazy… running into walls, dashing her head around, and inevitably breaking open the cauterizations and stitches on her foot. We ended up having to use “Bitter Apple” instead.

This saved my life actually! I wasn’t getting a “wink” of sleep and was seriously near a nervous breakdown from fatigue. One of my daughter’s friends at work recommended “Bitter Apple”, and it only took a few sprays for Chloe to LEAVE her FOOT ALONE! All night! (Thank you GOD… quite literally!).

I think part of the cone’s drawback was that it wasn’t transparent. Chloe couldn’t see to the right or left… all she could see was what was directly in front of her. It made her panic – the NOT knowing what was around and about. She could hear our voices, but her world had suddenly become very small. It was only as big as what she could see out the end of the cone.

You can’t very well explain to a DOG why they need a cone on their head. If you could explain that… well GEE! You could probably reason with them about why they should leave a surgical site alone! We could not explain to Chloe that the cone was for her own good.

For OUR Own Good

Isn’t that just like us? How often do we fight against what is only there to protect us? Some things that come to mind:

1. The speed limit. It’s not there to challenge you to see if you’ll get caught speeding. It’s there to protect you and others.

2. Exercise and eating right. How many thousands of Americans re-commit each January to make this change? It’s not because getting sweaty, pumping “iron” and eating fruits and vegetables are a lot of FUN. But we’ll live longer… and probably feel better too.

3. The 10 Commandments. Yeah, I know… it’s OLD TESTAMENT. But aren’t these things we should all continue to strive for even as “New Testament” believers? If you are a person of faith it normally means there is something different about you. If you covet, steal, murder, and hate, it is YOU who is scarred and broken in the end. Those “commandments” are for your good.

4. Taking medicine. Blech. But if you are sick, do you not take medicine when it may be what stands between you and good health… or life?

All 3 dogs were very concerned about my donning the "Cone of Shame"

I tried on the “Cone of Shame”. (Does that make me “game” or nutty?) The dogs were very concerned as you can see. All 3 sat in front of me and Chloe whined and breathed hard in my face every time I turned her way. It was very disconcerting to not be able to see around.

I believe that a “cone” is a good representation of how difficult it is to put your faith and trust in something or Someone that you can’t see. I have never seen God, yet He’s as real to me as anything I have ever experienced. I see Him in His creation. I see Him in the service and love of others. I see Him in answered prayer… even when He says “no”. Yet, I’ll admit to a major frustration in my faith walk. It is really hard not knowing what tomorrow may bring.

It can be very disconcerting to have a disability that may be progressive. It can be frightening to have an invisible disease like fibromyalgia, Meniere’s disease, or hearing loss. Have you ever been told “you’ll only get worse”? That knowledge can make it really difficult to have dreams and hope to see beyond “today”. We have to trust that what we have access too is enough for now. We should reach out to others and form strong relationships. We should research, prepare and educate ourselves. We don’t have to run around in a panic with this “cone” we didn’t ask for! Can you calmly and in faith, believe the “cone” is for your own good?

I have a “short-term” goal and a “long-term goal”. I strive hard to make every minute in pursuing both worthwhile. I know God has a plan for me that is not fulfilled as of yet. I know this because I am still here. It can be very frustrating sitting around with a “cone on my head and heart” — not able to see the big picture that God has access to  — since He PAINTED IT. I know keeping my eye on the short-term goals are important. It’s good for me. It keeps me focused, on track, and “real”. Yet I really want to be able to see 360°. I realize GOD can see the big picture… that’s what “omniscient” means… all knowing. I have to have FAITH that what I’m allowed to see and make sense of RIGHT NOW is enough. Having that “cone” on is for my own good.

It may not be very comfortable, but we have to believe that God has our best in mind.

Proverbs 3:5-6

Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.

At some point… I’m going to see beyond the cone.

Denise Portis

© 2010 Personal Hearing Loss Journal

Something’s Missing…

My daughter was about 75% finished with this Thomas Kinkade puzzle when she realized she was missing a piece!

This past week, my daughter realized she was missing a piece of a puzzle. In spite of this, she stubbornly completed it. Her original intent was to frame the completed project, but after the missing piece was discovered she dejectedly took it apart and put it up. At least she didn’t let it get her too down… she went out and purchased a bigger, more colorful puzzle the next day!

Ever Feel Like Something is Missing?

We’ve had a tough month here in the Portis household. There have been some pretty major events that have taken its toll on us emotionally and physically. Terry has finally stopped having bad dreams at night, and my doctor is now  “on my case” as it ultimately disrupted my once regulated blood pressure. I was forced to make a medication change, and I see her again in two weeks. Basically this has NOT BEEN FUN.

When our children are little and something hurts them… chances are a “barbie doll band aid” or “spider man patch” was enough to make the “owwie” feel better. If their feelings were hurt, a simple pep talk and instructions to “shake hands and say you are sorry” sufficed. Having young adult children is no easy task. They are independent thinkers and for the most part make daily decisions with only occasional requests for advice from mom and dad. Kyersten will only be living at home full-time for another 8 months as she transfers to a 4-year college next August. Needless to say, I am “treasuring up” these days. Both of our kids work part-time and go to school full-time. They serve in our church and are busy. They are also old enough for life to hit them hard with tragedy and heart ache. As young adults, their “boo-boos” are more serious. It’s very difficult as parents seeing your child face their first “life changing challenge”. It won’t be their last, but it isn’t fun to witness the first and be helpless to intervene.

Perhaps because we’ve been experiencing some very real emotional duress, I have been “waiting for the other shoe to drop“. Have you ever felt that way? It may be that you’ve been through something difficult and even though things are looking up, you sense something bad is still going to happen. Perhaps it’s the result of living for a prolonged period of time under stress. I think we can get in the habit of feeling stress and pressure. Even when life begins to smooth out, we are in the habit of waking up tense. I can’t shake the feeling that something bad is going to happen again.

I wake up that way, and go to bed the same. This has affected even my tinnitus, balance and hearing! Stress and pressure only make acquired disabilities seem worse. Oh sure! This trial has brought me to my knees in a hurry. I believe in prayer and do not have to be coached to go to God when I need advice, comfort, healing, forgiveness or thankfulness. When tragedy strikes, I do have to remind myself… “GO PRAY”, because I’m often just trying to stay in one piece. S.O.S. prayers are harder for me… I guess because I’m already under stress and have little emotion or brain cells for doing something different.

Face toward Heaven... Chloe can set a good example

We just had a beautiful snow here in Maryland. We received 3-4 inches and it was the lovely, huge, fluffy flakes. Chloe and our family dog, Tyco, love the snow. Tyco loves it because he’s an Elkhound… a winter breed. Chloe loves it because it makes everything smell better. Being a hound-mix, she has a better sniffer… than even Tyco. Her muzzle, nose and floppy jowls were all made to collect and intensify scent. She can even smell a scent on the air and may taste and savor it by licking at the air with deep breaths and puffs! When snow is on the ground, smells are intensified, and she LOVES IT. She would spend hours in the yard if I could endure the cold that long.

Today in the yard, the dogs raced around the yard to play. While Tyco went to make his rounds along the perimeter of our fence, Chloe trotted around the yard, nose to the ground, sniffing and tracking all the wildlife scents left from critters in our yard from the early morning hours. She would trace many all the way to the fence and stop when she realized “it had gone over”. She would quickly pick up another scent, and race after it even if it sent her in circles, up and over tree stumps, or scrambling through the wintry bushes. Chloe was getting herself worked up over one scent trail, and I suspect it may have been something “bigger than normal” by the way she was snuffling, whining, and tracking. Eventually, she stopped her frenzied tracking and stopped short with limbs trembling and deep sighs. With the last bit of snow melting away between her footpads, Chloe turned her nose towards Heaven and stood in perfect stillness for almost 5 minutes. The only thing I could see moving was her nostrils and her ribcage. She even closed her eyes and enjoyed the scent of the air… of winter…

It struck me how poignantly clear her example was to me as her human partner. After a disappointing “hunt”, she was still able to enjoy what she was good at… smelling the scents of the winter bouquet caught up in the chilly breeze around us. I realized that although our family has experienced something that will always “show” as a heart scar in our lives, I cannot forget that life is usually VERY GOOD. I had to take a minute and point my own nose towards Heaven to express “thanks” for life and the blessings I have.

Get on Livin’ it!

Don’t allow yourself to look at life’s stresses and tragedy as the “norm”. To easily we embrace what we feel is our “lot” or what we deserve. Bad things happen… and they happen to every person. Matthew 5:45: “For He makes His sun rise on the evil and on the good, and sends rain on the just and on the unjust.” Bad things happen to good people. (Bad things happen to bad people too, but they are usually more of a life consequence than a random occurrence!) Don’t anticipate that bad things are going to happen. Life is good.

ready to come in?

Denise Portis

© 2009 Hearing Loss Journal

Nightmare Trip

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Trip home:  Chloe kept making sure Mom was ok…

Kyersten Portis often writes for Hearing Elmo. She has only known “Mom” (Denise) as a late-deafened adult. Hearing loss affects the entire family unit, and my disability has made it possible that all members of my family are incredibly “ABLE”.

The scene was already something from a horror movie. It was late at night on HWY 501, and we didn’t know where we were going.  The road was out in the middle of nowhere. The mountains loomed around us and the road showed little sign of life apart from a few abandoned looking buildings. Off in the darkness one could see the dark emptiness of a valley. The road was winding, narrow, and the top speed limit was 20 mph in most places.  Your mind could conjure up pictures of Ax Murderers wandering along the road to murder and terrify… and umm – AX people.

We didn’t run into any Ax Murderers. Still, it was quite a scary trip.

We were traveling to visit a college I’m interested in transferring too in Virginia. It was up in the mountains. As the road became increasingly curvy, Mom became increasingly car sick.

“Why are we here? I have a balance disorder! I feel sick! I hate you, Terry,” she moaned from the backseat where she sat with Chloe. Dad at first defended himself, but then meekly apologized as she continued to pipe up at rather random moments that she “hated him”. (He said later she said the same thing when she was giving birth to me, so he figured she was just in pain and didn’t mean it).

Poor Mom. I offered to switch seats with her as I was in the front, but she refused. She finally started crying. After a couple of minutes, her crying stopped. I was relieved and glad she was feeling braver. I glanced into the backseat…

“Oh my gosh! She passed out!” I gasped. Dad flinched but kept driving. What could we do? We couldn’t stop, no civilization was in sight. (Besides, the Ax Murderers are out there!) Mom came back to consciousness finally.

She moaned, and asked if we were there yet (to which we lied and said, “almost”).  She asked Dad to turn out the headlights. When he said he couldn’t, she told him she hated him, and asked for me to help her find her cochlear implant (which was actually attached to her head) and passed out again. This time she hit the window. I yelped for Dad to pull over. I crawled to the back to where she was at poked her gently. Chloe came up to bark at shadows (perhaps Ax Murderers) and it seemed to bring Mom back to consciousness.  She asked why Chloe was barking and then basically repeated what she had said the first time she passed out. So… I sat in the back and held Mom up as she passed out another few times. I tell you what… there is nothing quite as scary as seeing your mom pass in and out of consciousness. I held my hand up to feel her breathing in and out, worried about how still she was.

We finally made it to our hotel. And Mom? Mom didn’t recall any of the events and felt bad about telling her husband she hated him a 100 times.

I was definitely thanking God she was okay and amused more than anything. She felt dizzy the rest of the night. I listened worriedly at the bathroom door when she took a shower, waiting for a “thunk” if she passed out. But she seemed to sleep it off and felt better the next day and was good on the way home.(We took a different route, and it was DAYLIGHT!)

Actually, the whole car trip could be seen as life with someone with a disability. As life became twisted and dark, Mom felt isolated from the world. But even in her isolation, her family was there. She was isolated from civilization, but we were there in the space (aka, car) with her. She may not have wanted to accept our help, but we were there for her. We held her up, encouraged her, and traveled to the end of the road with her. With God’s help, we brought her out of the depression and darkness and into contentment. Dad didn’t let her push him away, even when she said she hated him. He tried to fix it and carry her to safety. Chloe, didn’t know was going on honestly, but barked at the shadows that crept upon Mom. She stood over her in the dark, worried and trying to help. Many times Chloe helps chase away any gloom that Mom feels just because of her unconditional doggie love. I helped support her, and Chris prayed from home after getting a hysterical text from ME. Mom endured. And we arrived at the end of the road, to peace. We knew there would be other trips and roads, but we enjoyed the oasis of peace and look forward with the knowledge we’ll be okay. God is always there with us. And we always have each other =)

Kyersten Portis

(10 days shy of 19-years-old)    kyersten-brown-0021

Denise Portis

©2009 Hearing Loss Journal

Look Out Behind You…

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Look Out Behind You… and Call Your Dog!

We practice many things at the training center at Fidos For Freedom.  At first glance, the exercise may seem time consuming and even confusing. (My kids ask me from time to time exactly HOW are they going to use Geometry in real life?  Why do they have to do the practice exercises if they will never use it?)

I have to admit that occasionally I think to myself, that Chloe and I will never use a certain command in public.  I wonder from time to time, why we seem to practice some of the commands that we do at the center. I always participate, however, as I have learned to trust the trainers and their judgment in such matters.  One exercise we do several times a month is a response to the command, “Look out behind you and call your dog!” Clients are to take a quick look behind them to make sure nothing is in their way. You then take two or three quick steps backwards, and give the formal command “Fido, Come!” to your dog.  The dogs have been trained to quickly position themselves in a “sit” in front of you, with their nose facing your stomach.  I have very poor peripheral, so a “quick look behind me” has never been an easy task! For me to take two or three “quick” steps backwards, can mean a spill on a day my balance is really “off”.

I have to admit that internally I grumbled from time to time when asked to perform this command on the training floor.  Never again…

When Least Expected, It May Come in Handy!

This past Friday, I left the house early to go to Wal-mart.  I have a love/hate relationship with Wal-mart. On the one hand… I save quite a bit of money at this store. They tend to have a big selection, carry name brands, and have great sales. On the other hand… the lines are awful, it’s hard to find a place to park, and the stores I go to are often messy. (Not easy to navigate “messy” when pushing a cart with a working dog alongside!)

I have found, however, that if one goes early in the day on a weekday, it isn’t too much of a trial. So Friday morning – bright and early, Chloe and I plus my son Chris, headed to Wal-mart.

Chris went to look for a game that was suppose to be “out”, so Chloe and I headed into the pharmacy section alone. I noticed almost right away that she’d startle, and then cock her head to listen carefully about every three or four feet. I was busy looking for my shampoo, but automatically watched her a little more carefully for any further clues as to what she was hearing. As we neared the end of the aisle, her ears were perked up and she looked nervous. Every few seconds, I caught the sound of “something”, but honestly could not tell for sure what it might be! As we rounded the corner, a harried-looking mother with a couple of youngsters in tow came around the next aisle. The kids were screaming and crying, and one toddler was in a sprint away from mom. The toddler hit the end of my cart head-on with both hands and SHOVED. Two or three seconds before impact, I shot a quick glance over my shoulder and took three frantic steps backwards, and commanded urgently, “Chloe… COME”! Chloe obeyed immediately, even though her attention was on the family.  The cart ricocheted off an end-cap of baby oil products. I plucked my purse out of the cart, and put Chloe in “heel” beside me… protected from the main aisle. The mother apologized profusely, and corralled her kids to continue shopping. As soon as she was out of sight, I squatted down to face Chloe and exclaimed:

“Chloe! We Looked Out Behind Us!  We did it!”  Chloe cocked her head to the side like she does when she’s trying to figure out what I’m saying.  (Hmm… was there a command in there that I recognize?) I was positively gleeful… and Chloe?  Well she was not exactly sure why I was so VERY excited about a simple “come” command! Her tail gave a half-hearted flop and she wiggled closer… which of course caused me to plop into the floor from my crouched position. I was totally fine with that! I threw my arms around her and explained to her out loud (and likely LOUDLY given the fact that I have a hearing loss…), “Chloe, I never thought we’d use ‘Look Out Behind You‘, and I did it!  We used it perfectly! I wasn’t hurt… you weren’t hurt!  Hey, it worked perfectly!”  In hindsight, I was very likely a little too excited about something rather trivial. Actually by this time I had drawn a small crowd of observers.

A lady reached her hand out and asked, “Can I help you up?”

“Nope”, I responded cheerfully, “that’s what she’s for!”  Chloe helped me up with a modified ‘brace’, and I reached over for my cart.

A grandfatherly-looking man stood there watching, and remarked dryly, “she’s better behaved than most kids in here!”

Still on a euphoric “high”, I gushed, “YES!  And we did ‘look out behind you‘ perfectly!”

His bemused smile turned to concern and he looked behind him with confusion. I plopped my purse back into the cart and wheeled away with my head in the clouds.

Practice, in Order to be Prepared

Later as I put away groceries and toiletries, I still had a smile a mile wide on my face. I used “Look Out Behind You“! I couldn’t help but chuckle about it even hours later!

You know? It pays to practice things! Think of how practicing even responses to uneducated questions can be helpful! As a person with hearing loss, I have heard some fairly ridiculous questions before. I have also been wounded by rude and simple-minded questions. Yet my response has not always been in such a way that I was able to advocate in a positive way. Sometimes my response, further cemented irrational assumptions by people with normal hearing and balance.  Take for example the following:

Why do you talk that way? Do you have a speech impairment?

Wrong answer: “No, stupid!  I don’t have a speech impairment, you have a BRAIN impairment!”

Right answer: “Actually I have a profound hearing loss. I can’t hear myself anymore and I know I pronounce things funny sometimes.” (I’m so thankful for my cochlear implant! My speech has dramatically improved, even when I’m really tired!)

Why do you wear your hair up where everyone can see your cochlear implant and hearing aid?  Why do you want them to see your disability?

Wrong answer: “It’s none of your business stupid!  I can wear my hair the way I want!”

Right answer: Actually I do that so people are aware that I don’t hear well. I don’t want someone to be upset if I don’t answer when called, or answer inappropriately to a question I didn’t hear well.  It clues them in right away that if they take some extra time to communicate well, I will likely do just fine!

Why do you still ask for ‘repeats’ and not hear things? I thought the cochlear implant was going to FIX you!

Wrong answer: “I’m not Jamie Sommers, stupid!” (Do you see a recurring pattern of STUPID in the wrong answers? Grin!)

Right answer: “Actually my bionics allow me to hear things I never thought I’d hear again! But it isn’t perfect hearing, and I will always be a person with hearing loss. Compared to where I was before the implant, I am doing amazingly well!”

If you are deaf, how can you use a telephone?

Wrong answer: Why shouldn’t I be able to use the phone?  I can eat, drink, and go to the bathroom by myself too!”

Right answer: We live in an amazing era of technology.  My cochlear implant can utilize a t-coil switch, which allows me to use the phone with only a little work, thanks to telephones that are t-coil compatible. I can’t use EVERY phone, but I can use MINE.

Why do you have an assistance dog? You aren’t blind, and it draws attention to you!

Wrong answer: Actually she’s an attack dog… Chloe… BITE HIM!

Right answer: Having both Meniere’s disease, and hearing loss, Chloe simply makes my life easier. She takes a lot of stress out of the fact I don’t hear well. I hear voices pretty well with my CI, but Chloe makes sure I hear all those other noises. I am much safer now, and can do things independently. If I drop things, it takes Chloe seconds to retrieve something for me that would have taken me several minutes to get myself because of my balance issues. I don’t have to ask others to help, because SHE is my “helper”.

If you have an acquired disability, I’m sure you too have heard your share of “stupid questions”. Perhaps your disability is not widely understood, or is “invisible”. We can’t walk around with a neon sign that says, “disabled person” over our heads. And who would want to? Frankly, I highlight what I CAN do, not what I cannot.  Perhaps practicing responses to some of the questions you have heard, will insure that when the time comes for you to reply again, it will be in a positive and educational way. After all, a curt and petty response only hurts the next person with a disability. A measured, well-thought and rehearsed answer is much more likely to produce understanding and acceptance in even the most STUPID irrational person!

Denise Portis

© 2009 Hearing Loss Journal




What Came First?

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The Chicken or the Egg?

What came first, the chicken or the egg?  That phrase brings a smile to my face every time I come across it.  It has been the cause of many a debate from both my childhood and my present.  I suppose I’ve always been surrounded by people who love to argue a point.  Everyone knows the chicken came first.  If you disagree with that… well, you’ll need to write your own post!

In life there are many cause and effect changes.  These are either passionately discussed because of more serious consequences that can occur, or worse – not discussed at all due to what many may view as a “taboo” subject.

I’ve always been a “worrier”.  I can remember hearing from my mother at a very young age, “Denise… don’t make mountains out of mole hills”. I was also told that if I didn’t have something to worry about, I’d work hard until I had found something to worry over.  As an adult, I prefer to look at my “worryin’ over things” as my way of preparing, planning, and anticipating outcomes.  Believe it or not, “worrying” calms me down.

But I am not misguided in believing that worry is the same thing as anxiety.  I don’t remember being an anxious kid.  “Worrier” – yes, anxious – no.  I do know that I have had anxious periods in my life.  I have a new “friend” who is a phenomenal writer.  I’ve been pushing Lisa to investigate writing a book and hope I have finally twisted her arm in doing so.  Having benefited from her wisdom and straight-forward speculations, I’ll be one of the first in line to buy several copies.   She has been blogging about “anxiety” quite a bit lately. (If you have had problems with anxiety, I encourage you to begin reading her posts beginning here).

I have met many people with different types of disabilities.  I have also met many “anxious” people.  Often, those people are “one and the same”.  What came first?  The disability or the anxiety?

We Can Make Ourselves Sick

One doesn’t have to “google” stress and anxiety very long before they begin to find out these feelings can affect our physical health.  Our body’s immune systems can even be weakened when exposed to stress for prolonged periods of time.  Although “thinking happy thoughts” does not necessarily cure every ailment, being stressed, worried, anxious and pessimistic can certainly hinder our getting well.

Many physicians who specialize in critical care fields have long been taught how important it is to treat the patient’s mental and emotional state as well as their bodies.  Even a patient’s spiritual beliefs can aid in recovery.  Discovering (or re-discovering) hope and belief in God, can greatly benefit a patient who has experienced an injury or life-changing illness.  My husband wrote his dissertation along these lines.  His book is NOT easy reading – smile. Effects of Religiosity on Life Satisfaction Among Survivors of Brain Injury, was written after having seen the direct results of faith on patients with a TBI over a number of years. Terry researched whether or not people with brain injury have higher life satisfaction if they are involved in religious practices. People with brain injury traditionally have one of the lowest life satisfaction scores of any population. They have similar scores to people in prison!  In contrast, if someone with a TBI has no faith – no belief system, they tend to have very low expectations and life satisfaction.

Disability or Anxiety?

So… which came first?  Anxiety can certainly be triggered by “life events”, but it can also be a chemical imbalance in an individual.  Anxiety disorders are serious.  Feeling anxiety – an “anxiousness” – from time to time is not uncommon and even expected in this thing we live called LIFE.  Can a disability, especially an acquired disability, cause us to feel anxious?  Can that anxiety, ignored and untreated, lead to a disorder? Yes… and yes.  However, one can have a disability and learn to “cope”.  Learning to cope, and developing new interests, skills and networks, makes a disability more of a discovery!  One learns how to acquire new ABILITIES.

Being disabled does not mean one is not “able”.  Certainly being deaf and having Meniere’s disease, places me in a disability group, or category.  I don’t consider myself disabled as long as I work hard at being “able”.  A cochlear implant, support group, a service dog and advocating in a positive way, have allowed me to create a way to cope… to live in a normal way.  I’m living a “new normal”. These activities keep me from feeling anxious.

Does that mean I never worry?  Heck no!  But worrying is not anxiety.  If I begin to see a set pattern of anxiousness, I treat that very seriously.  Why am I anxious?  Has something triggered it?  Am I eating right, sleeping well, and taking care of myself?  However, WORRY is different than anxiety.  I have plenty of daily worries that actually allow me to process things and plan my day.

Am I worried when I stand at the top of a stairwell with Chloe in heel, people milling all around me, and the room spinning counter-clockwise as I desperately try to adjust my eyes to the depth of the stairs below?  Well YES!  But that worry has allowed me to take steps (pardon the pun) in making it possible for me to traverse stairs safely. Chloe acts as a counter-balance, I instruct students around me that I’m not listening or talking until I get to the bottom… so don’t bother me, I breathe evenly and fix my eyes on no more than two steps at a time, and before I know it… I’m kissing the floor in relief at the bottom!  (OK, that’s an exaggeration, but I certainly do feel euphoric!)

Do I feel anxious when my cochlear implant batteries go dead?  (DUH)  Of course I do!  But my worrying about it happening at an inopportune moment, has led to a very real plan of action.  I have batteries EVERYWHERE.  They are in Chloe’s working vest, my pocketbook, the van, at home, and in my office. My CI is set up to give me a 20 minute warning beep.  When I hear it, I continue with what I’m doing but I include a few moments to secure new batteries.  I’m an expert at slipping out the battery compartment, punching out the three #675 batteries, and replacing them with finesse and speed.  I’m never “deaf” for very long.

I plan in advance to get 8 to 10 hours of sleep each night.  (Yes, you read that right).  My sleeping a great deal is not a warning sign that I am depressed.  I plan to sleep 8 to 10 hours a night!  I make it a priority, and I’m often the first Portis in bed each night.  I get a great deal of sleep because I’ve discovered that I “hear better” when I do.  It takes a lot out of a person to hear through a cochlear implant.  Lip reading is not easy.  Making sense of the noise in my world takes concentration.  I need sleep to function well.

Because of my Meniere’s disease, I consume less salt and caffeine. I take Manganese and working hard at trying to exercise regularly.  (My sister and I have a New Year’s challenge to each other to do better at this!)

At the beginning of this school year, I worried like crazy about some of the things I’m required to go to as a teacher that are at night.  Meniere’s has made driving at night difficult, as headlights from oncoming traffic trigger vertigo and make it difficult to see.  The light acts as a “beacon” if you will, and my eyes are drawn to the counter-clockwise beams around me instead of the road ahead. I worried about how to tell my director that I couldn’t do things at night. But that “worrying” allowed me to plan how I would present my reasons and requests. She listened, and approved my request to not attend meetings after dark.

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To some people, all the things I do each day to be safe, hear well, and live a full and productive life may seem tedious and strange.  But these things are “my normal”. These plans and daily preparations are not tedious and strange for ME.  Santa Kyersten (my daughter) gave me a cane for Christmas.  It was something on my wish list and for me, a necessary tool to live “my normal” on rainy days when my Meniere’s disease makes my balance much worse.

Disability, not Inability

Being disabled means one must find a way to do the things you want to do in a new way.  My deaf/blind friends enjoy communicating with friends and relatives by utilizing both cochlear implants and JAWS (a screen reader program for those with visual challenges and impairments). My friends who have mobility challenges, use service dogs, walkers, canes or power scooters. Late-deafened people learn to speech read, use hearing aids, cochlear implants and assistive listening devices.  I have chosen to have a partner to help of the canine variety!  Chloe gives me independence and confidence.

I’m not trying to suggest that there are not things that every disability group are simply not able to do. I’m deaf.  I’m not able to have a job that relies heavily on communication by phone. There are jobs I could never do that require being able to hear well.  I’m afraid I’ll never be an Air Traffic Controller!  However, the most empowering thing an individual with a disability can do is learn what they CAN do.  We live in a wonderful day of technology and gadgets.  I can do many things that I would not have been able to do had I become deaf even 20 years ago. When new people come to our local hearing loss support group, we work hard at helping them find ways to continue doing what they want to do at both work and home.  There are times an impasse is reached, and we encourage finding NEW things that bring just as much joy and satisfaction as a past job or hobby.

One is only truly no longer “able”, when they give up and resign themselves to isolation and feelings of worthlessness. Yes… there are things I can no longer do that I once enjoyed. But people who cared “booted me in the backside” and encouraged me to find new things I could do!  I have a disability, but I live a rich and full life.  I feel productive and satisfied with my life.

I’m sure that being a person of faith, has made this transition to a “new normal” easier for me. My life can change, and my abilities may “morph”. God never changes, nor deviates from being my Anchor that HOLDS.  The reality is… HE came “first“, and I work hard at keeping Him there in my life.

Denise Portis

© 2009 Hearing Loss Journal

Does Hearing Loss Change or Affect Your Personality?

Dr. Terry Portis a counseling psychologist with 20 years of experience as an educator, education and non-profit executive, speaker and writer. His interests include history, leadership, technology, disabilities, family and faith. His wife Denise has a profound hearing loss and has a cochlear implant. They have two teenage children and have lived in Maryland for six years. They moved to Maryland from North Carolina, and Terry is still a huge UNC basketball fan, even when they are having a bad year (which almost never happens). He is a co-writes for Hearing Elmo, but has his own blog as well.

Terry with our ancient Pom, Ebony at Harpers Ferry 10/19/08

Does Hearing Loss Affect or Change Your Personality?

There are many ways to describe personality and to use the study of personality to help us understand people’s tendencies when faced with opportunities and challenges. Each person is a unique individual, and we must be cautious not to put people into neat little boxes. However, understanding how people tend to operate in comfort zones will help us understand ourselves and the people around us. In fact, personality assessment and skills assessment are the two primary ways businesses and organizations are organizing work teams and project leaders. So, personality theory is again on the cutting edge of management and human resources.

One of the most basic and easy to understand models of personality identifies 4 major personality types. Almost everyone has a “primary” personality type, but most people are a “blend.” If a person has questions about their own personality type, a short survey of family and friends usually provides the needed information.

The Choleric personality is an extrovert, “the doer”, and optimistic. They feel like they must correct wrongs and injustices, and also have a compulsive need for change. Their strengths include: goal oriented, sees the whole picture, organizes well (in a big picture sense, not details), thrives on opposition, excels in emergencies, and focuses on productivity. Their potential problem areas: can be compulsive workers who can’t relax, has an inner need to be in control, may run over people to get the job done, frequently pressures other people who are not moving at a “full-steam ahead” pace, and sometimes look down on others who are not choleric or who have different leadership styles.

When hearing loss occurs, the Choleric will “attack” the problem and will go to get help right away. However, once fitted with a hearing aid or cochlear implant, they may never interact with other hard of hearing people again. To them, the challenge has been addressed, and the various tasks of this “project” have been completed. Those who DO get involved with hearing loss issues, usually become major advocates and leaders. Hearing loss does not usually affect the choleric unless it negatively affects their job. This will damage their ego and self-esteem, and they may retreat and give up. For most Cholerics, their “job” and vocation is WHO they are. If hearing loss affects their ability to do their job, they can be extremely traumatized.

The Phlegmatic personality is an introvert, “the watcher”, and pessimistic. They want peace at any price. They love stability, and people have trouble finding something bad to say about them. Why? They hate conflict and rarely “cross swords” with anyone else! Their strengths are: competent and steady, peaceable and agreeable, mediates problems, avoids conflicts, good under pressure, and finds the easy way. Their potential problem areas: can be resistant to change, may have a problem with procrastination, do not like to communicate their feelings, often have difficulty making decisions, and may appear lazy or unmotivated.

When a Phlegmatic has a hearing loss, they may “bluff” for some time. “I don’t have a hearing loss”, they may say. When the hearing loss gets to where they cannot “bluff” any longer, then well-meaning family members or friends can finally talk them into going to get help. They may attend meetings and advocacy groups, but usually because family members with a different personality type want them too! To avoid conflict, they get involved in these groups to keep the peace. They will eventually be involved in many “behind the scenes” activities. They will more quickly recognize another phlegmatic with hearing difficulties. A phlegmatic without support during their hearing loss crisis, may be the most prone to isolate themselves. They may quit their jobs, church, social groups and LIFE.

The Sanguine personality is an extrovert, “the talker”, and optimistic. Their relationships are more important than any of the other personalities. Even at work, their co-workers are more important than the work itself. They are usually curious and expressive. Their strengths include: ready to volunteer, love to think up new activities, look great on the surface, creative and colorful, energetic and enthusiastic, can inspire others to join in, and they can be very charming. The potential problem areas: can talk too much, are sometimes good at starting things, but weak in finishing them, avoid negative situations even if they should work through it, can barge ahead without counting the costs, and are quick to give simplistic answers to every question.

When hearing loss occurs in a Sanguine personality, they will usually get help right away because they cannot communicate well with people. Communication and relationship are everything to them! They many times will be involved with hearing loss issues and groups because they love to interact. They can be negatively affected by hearing loss if it seems to hurt their relationships… divorce or loss of a partner who cannot accept the hearing loss, or children and/or parents who give negative feedback about their new communication “issues”. This can devastate a Sanguine and send them into depression, which rarely happens to this personality type.

The Melancholic personality is an introvert, “the thinker”, and pessimistic. They are content to stay in the background, love orderliness and organization, and are analytical. Their strengths are: detail conscious, schedule oriented, persistent and thorough, economical, likes charts, graphs and lists. Their potential problem areas are: can spend too much time planning, expect perfection from themselves and others, often have low self-esteem, can be gloomy, and may be prone to look for trouble.

When a Melancholic experiences hearing loss they are the most likely to be depressed and extremely emotional about it. If friends and family members can “rally” them out of their “blues”, they will usually seek help and then become very compassionate advocates for hearing loss issues. They also enjoy behind the scenes work and are great “listeners” to someone new to hearing loss.

Hearing loss does affect all personalities differently. Although equally traumatic, different personalities may adjust more quickly and readily to coping mechanisms and technology. Personalities do not change, but strengths that may not have been utilized before hearing loss may manifest themselves. Also, weaknesses that may not have been as apparent and more in control before hearing loss, may become real problem areas for the person after hearing loss. It was also noted that adjustments can be made, but then additional hearing loss might occur. Some personality types might simply adjust AGAIN, while others may have a much tougher time “rallying”.

Dr. Terry D. Portis

© 2008 Hearing Loss Journal

The “Folly” of Allowing “Deaf” to Define You

Simba (My parent’s pooch!  He’s the smartest little thing and has made a great addition to their retired life in Florida!  He’s a Cock-a-Poo, and doesn’t look like ANY canine movie star!)

The Folly of Hollywood’s Influence

I love my mother.  Mom is one of my best friends.  But being a mom myself now, I can clearly see that my mother was extremely influenced by the canine stars she saw on television as she was growing up.  I can make this assumption with a great deal of confidence, based on the fact that she has had two “look-alike” dogs of her own through the years.  Prior to retiring to Florida, she talked my Dad into buying a boxer that bore an resemblance to “Pete” on “Little Rascals“.  I don’t see the resemblance.  After all, it is fairly obvious the circle around his eye was PAINTED on, and Mom’s boxer had no make-up whatsoever!  But “Pete” was in black & white!  So… who knows?

“Jingles” did not last very long as she was not a well-trained, super-star dog.  On the contrary, she was a rather destructive and ill-mannered dog.  She found a new home on a new farm with a family who had a little more patience.

Prior to “Jingles”, while I was still living at home on the ranch in Colorado, Mom talked Dad into buying a collie.  I guess Mom had a thing for “Lassie“.  I didn’t mind at all, as I thoroughly enjoyed watching not only the current “Lassie” series, but never missed a black and white re-run of the episodes Mom watched as a child.  Mom may have insisted on a pedigreed collie, but Dad insisted on the name.  “Jean’s Folly” was our … erm… COLLIE!  We called her “Folly” for short.  I wish I had a picture of Folly.  She was actually much prettier than Lassie!  She was the most beautiful collie I have EVER seen.

Living up to a Name

It turns out that Folly was aptly named.  It seemed she was incredibly stupid.  At least that is what we thought in the beginning…

In 1982, Folly was accidentally left outside when there were some stray dogs from neighboring ranches running around.  These dogs thought Folly was really beautiful too… at least that’s what I told myself because she ended up pregnant.  Folly was an outside dog; a different type of working dog than the one I have now.  Folly’s job was to keep the on-site livestock safe, keep coyotes from killing our cats, and made sure that snakes stayed out of the yard.  We didn’t interact with Folly as much as we should have.  Had we done so, we would have noticed that she was pregnant PRIOR to her having puppies.  It was at the birth of her puppies that I first began to suspect that Folly wasn’t as dumb as we first thought.  It was October, and we had our first snowfall on the ground.

Folly went under our picnic table which was next to the house, pulled out most of her own hair, and had puppies on the cold, hard ground.  (Pretty pitiful, huh?)  On the insistence of my three siblings and myself, we brought poor Folly and her puppies inside.  Their new make-shift quarters were under the rarely-used pool table downstairs in the game room.  Folly and the puppies did really well for a couple of weeks.

During those weeks, I had the opportunity to really get to know Folly better.  She would look at me with bright, inquisitive eyes, and watched everything I did with intelligence and attentiveness.  She loved for me to “visit” her under the table with she and her puppies.  (It’s fairly difficult for a teenage girl to fit under a pool table with a large collie and a litter of pups!  But I’m talented!)  I dutifully took her outside “when nature called”, and brought her back inside so that she could be with her puppies.  However, the cold snap lifted and the weather warmed up enough, that my Dad said Folly and her pups had to be moved to the barn.

I fixed one of the rooms in the barn up with plywood and bales of hay.  It was cozy and warm.  The first couple of days I locked Folly into the barn with the pups.  I think part of me was beginning to suspect something about Folly.  I started doing “tests” of my own to see if my “feeling” could produce enough evidence to allow me to verbalize my fears.

Not Dumb… Just Deaf

I would sneak up on Folly when she was asleep, and as long as I took the time to move slowly enough that no vibrations were caused by my boots on the ground, I was able to “scare the daylights out of her” 9 out of 10 times!  I would watch her looking out over the alfalfa field directly south of our home.  She seemed eager to continue her vigilance in keeping the coyotes away.  When I was ready to lock her back into the barn, I would call her… nearly screaming her name and she would continue her guard of the yard.  I found, however, that if I walked into her line of sight and called her name with a smile and a pat on my thigh… she would come running with the unadulterated joy of a dog when seeing someone in their family.

My conclusion?  Folly was deaf.  I mentioned it to my dad.  Dad is a quiet man who is at first pessimistic of others viewpoints until he acquires enough evidence to conclude that they may be right.  He would have made a great debater.  At supper several nights later, he announced in a matter-of-fact way that he thought Folly was deaf too.  To this day, I have no idea what kinds of “tests” he ran himself to come to that conclusion.

As we felt Folly was now comfortable in the barn with her puppies, we left the door open for her so that she could come and go as she pleased.  The puppies’ eyes were just beginning to open, and I couldn’t wait to get home from school each day to go visit them in the barn.  It’s a shame we didn’t leave that door open for the first time over a weekend.  I’m certain I would have noticed that the puppies were failing had I been able to spend more time with them.  But as it was, one evening a few days later, I went to visit them and found them all dead.  Every single one of them.  My parents were at work, so I called my grandfather on the phone in near hysterics.  He and my grandmother lived on the ranch a couple of miles east of us.  I don’t know that he completely understood what was wrong, but he certainly arrived quickly!

He determined that the puppies had not been fed.  He could tell that they hadn’t been cared for in a couple of days.  He asked me questions about what kind of mom Folly had been.  I explained to him how great she was with the puppies when inside the house, and that everything was fine when she was locked up in the barn with them.

My dad must have shared with him that she was deaf.  He concluded that if she couldn’t hear them she didn’t know they were hungry.  I was furious and shouted at both my grandfather and Folly.  How could she not know they needed fed? How could something so IMPORTANT escape her notice?  Did hearing the pups trigger true maternal love?  She couldn’t be deaf AND care for the puppies?  My grandfather insisted I was trying to make her out to be more than a dog.  Instincts only went so far.  Sometimes competing instincts were even more dangerous.  Folly’s instinct to be on guard of our yard and farm overrode her maternal instincts.  She was conditioned to SEE what needed done, not HEAR what needed done.  None of this made sense to me.  I’m ashamed to admit that all I felt for Folly after the day her puppies died was HATE.

To me, Folly was back to being “dumb”.  I looked at everything she did after that with the irrational thinking that mistakes she made were just plain stupid.  I conveniently seemed to forget that she was deaf – that she had a disability that for a DOG was almost catastrophic!  I ignored the impact her deafness would mean on how she was measured in value as a working dog on a ranch.  I ignored it all the way up until the day she walked right out in front of a pick-up truck she couldn’t hear, driven by a distraught neighbor who had no chance of stopping in time.

I grieved for Folly for a very long time.  Quiet, yet bitter tears drenched my pillow at night for several weeks.  I remember thinking, that of every bad thing that could possibly happen to someone or something, deafness had to be the equivalent to a death sentence.  It was for Folly’s puppies.  It was for Folly.

Life’s Little Ironies

My husband and I first began to realize I was losing my hearing when I was twenty-five years old.  My… ermm… puppies, were 2 months old and 13 months old.  I have probably thought about Folly every week since that first audiological appointment in 1991.

For me, my deafness does not define me.  It is simply who I am.  A cochlear implant does not negate my deafness.  Certainly, I am indeed “hearing again”, but it is not perfect hearing.  I will never have perfect hearing again this side of Heaven.

To “hear” and communicate well, I take advantage of the latest technology.  I try to eat right and get plenty of sleep.  I attend support groups with other late-deafened individuals.  When I can, I go to workshops and conferences for people with hearing loss in order to educate myself.  Folks?  I try really hard.  But at the end of the day, I’m still a deaf person!  Actually… at the end of the day when I take my cochlear implant off, I am literally a deaf person!  Smile!

And yet, I’m OK with that.  Learning to communicate differently has made communication BETTER for me.  I drop EVERYTHING to talk to people.  I look them in the eye; I process what they are saying.  I acknowledge when I’m not hearing well, nor understanding well.  There is nothing else on my mind when I talk to someone, other than what it is they are saying.  If anything else is on my mind, I immediately stop understanding.  I truly give people my undivided attention!

I realize that Folly was just a dog.  But I recognize the difference having a loving supportive family has meant.  I recognize that God has brought specific individuals, message boards, writers and speakers into my life to “grow me”.  I wish I had thought of ways that Folly could have lived her life in safety.  I wish I had not equated her disability with her intelligence.  It’s actually a surprise she lived as long as she did, when one considers the enormous number of dangerous possibilities for her demise on a working ranch.

I have thought of Folly more than I have any other dog I have ever owned.  It will likely surprise my family to even read this, for my thoughts were private up until now.  Perhaps I am finally coming to terms with what it means to have a disability and still have a productive and meaningful life.

I raised “puppies”, I teach wonderful, eager students, I have friends who are hearing and friends who are culturally Deaf.  I work hard to minister to a group of peers that are late-deafened.  My deafness does not “define” me.  My deafness is a blessing, and enriches my life.  I didn’t discover this quickly.  I had to become an “old dog” first!

Denise Portis

© 2008 Hearing Loss Journal