Twinkle Lights that Don’t Twinkle

twinkle lights

I discovered something by accident last year. I don’t like for twinkle lights to twinkle. I mean… I want the lights to be ON and to actually light up, but I don’t want them to blink. Part of living with an acquired disability is learning to make adjustments. Having Meniere’s disease may mean that you learn what may be specific triggers for you and do what you can to avoid those triggers. I have problems with lights. This is part of the reason I don’t drive at night anymore. I don’t have night blindness, but oncoming traffic light triggers extreme vertigo. So I don’t drive at night. It’s a pain, but a necessary change in my life.

Other kinds of lights bother me. I discovered that Christmas tree twinkle lights make me feel as if the room is rotating. Quickly. So I am making adjustments that include a delay in decorating the family Christmas tree until I can get to the store to buy more twinkle lights – ones that don’t twinkle. So – picture with me plugging in our Christmas tree every evening and BAM. LIGHT everywhere. But it won’t twinkle… which means I can hang out in the same room as the tree is in without heaving all over the nearest family member.

Making Adjustments

One of the wonderful things about having a blog with numerous guest authors is that I have learned a bunch of things about other disabilities. Being a client at Fidos For Freedom, Inc., has also helped because I have been able to personally get to know people who live with other kinds of disabilities and chronic illnesses. Through the years I have learned about some of the adjustments that folks use to navigate life:

1. Get more rest

According to the National Sleep Foundation, average, healthy adults need 7-9 hours of sleep every night (National Sleep Foundation, 2011). While most of us very likely receive far less than that, the experts agree that this is the amount we should strive for every night. However, people who live with disability or invisible illness may actually require more. At the very least, these folks should make the 7-9 suggested hours a priority.

I now know that people with MS, fibromyalgia, chronic fatigue syndrome, and various neurological disorders may not only need a good night’s rest, they may also need a daily nap. Doing so may mean that they can continue their day performing at their best. Not taking one may mean they are more at risk for an accident, “brain fog”, etc. One of my friends actually said her doctor told her, “If I need to write you a prescription to take a nap everyday so that you can get the rest you need, I’ll write you one!” That’s what I need. A prescription for a nap! 🙂

2. Leave Home Prepared

People with acquired disability likely learned the hard way to leave home prepared. That may mean making sure you have extra cochlear implant batteries. It may mean that you have an extra cane in the car. Maybe it means that you make sure you have an extra meal or snack if you are diabetic. You may have a medical pack that holds injections, emergency contact information, medicines, etc. If you have a service dog it requires that you walk out the door with water, an extra meal (in case caught away from home during mealtimes), clean up bags, vest and I.D. Spontaneously running out the door while only grabbing your keys is something you just can’t do anymore. But that’s OK. Learning to leave home prepared really takes very little time and in the long run can only help you.

3. Medic Alert Identification

Whether you wear a medic alert necklace, bracelet, or carry a card, you probably have some way of letting emergency response personnel know about special medical information that may just save your life. My own bracelet was so old, the engraving was barely discernible after years of scratches and wear-and-tear. For less than $30 I replaced it. When I told my husband he’d see a charge for it on the credit card bill he said, “You know? I don’t even know where mine is. I probably should replace mine as well”. I sat there stunned for a minute – looking at my significant other who happens to only have one kidney and gave him a “Denise sermon” that was probably not only LOUD, but unforgettable. Did you know…

  • More than 95 percent of respondents look for a medical ID during emergencies.
  • More than 75 percent look for a medical ID immediately upon assessing a patient.
  • 95 percent look at the patient’s wrist to find a medical ID, and 68 percent look for an ID on the patient’s neck.

Some of the stuff out there is very attractive for those who turn up their noses at traditional looking medical alert jewelry. However, I must caution you that there has been an alarming trend suggesting these new options may not be identified during an emergency. Yes, the sterling silver band around my wrist may not be the prettiest thing in the world, but I’m confident that in the event of an emergency it will be recognized for what it is. I’m perfectly happy being “smart” if not fashionable.

4. Check the forecast

Meteorology is NOT an exact science. I always check the forecast. I may not be able to call in sick to work when it is raining and a Meniere’s flare kicks my butt, but just knowing in advance the weather is going to be bad can at least help me mentally prepare. I can make sure I grab that cane in the car and remember to hold Chloe’s vest handle instead of just her leash. People who have mobility challenges may have to make schedule adjustments if they cannot easily or safely navigate away from home if the weather is bad.

5. Charge your cell phone

Even though I have a hearing loss, with today’s technology advances I can use and carry a cell phone with t-coil settings, text, access the Internet, and much more from a mobile phone. The only problem I ever run into is when I carry around a phone that doesn’t have a charged battery. I’ve done this enough that I think I’ve finally instilled a good habit of always charging my phone at night, and making sure each vehicle has a charger that can be used with the cigarette lighter. I even carry a small charger that I can plug into a computer at work if needed.

6. Other:

Honestly? One could write a book on the number of adjustments one makes when living with a disability or chronic illness. Some of the things YOU do may not even be things someone who shares your diagnosis must do. Don’t fret about Christmas tree lights that don’t twinkle. Even people without disability make adjustments as they go through life. Folks get reading glasses, stop eating spicy food, and walk instead of run for exercise. We do this because we are smart (grin) and malleable. We do what we must. My Christmas tree may not twinkle from now on, but it is still BEAUTIFUL.

Denise Portis

© 2013 Personal Hearing Loss Journal

National Sleep Foundation. (2011). How much sleep do we really need? Retrieved October 22, 2012 from http://www.sleepfoundation.org/article/how-sleep-works/how-much-sleep-do-we-really-need

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♫♪ Running on Empty… ♪♫

hferry 013

I’m constantly getting my English idioms and colloquial expressions mixed up – much to my husband’s delight. He teases me about it constantly. So you’d think I’d stop using them, right?

No. Not so much.

Just the other day I said, “I feel like I’m waiting for that ‘feather that broke the camel’s neck‘ to drop!

My husband struggled to choke back his laughter and managed to wheeze out, “Honey, I think that is ‘straw that broke the camel’s back‘ and ‘waiting for the other shoe to drop‘. Honestly, it’s a wonder I ever know what you mean!

Yes, dear. Shut up.

But he’s a good listener so without any further colloquial expressions, I tried to explain why I’m “running on empty“, “circling the drain“, … See? I CAN’T FREAKING HELP MYSELF! 🙂

Running on Empty

I was born in the mid-60’s, which means I’m a child of the 70’s. Do you remember Jackson Browne’s song, “Running on Empty”? If you need a reminder:

I have to tell you, I’m there. You don’t have to have invisible disabilities, or chronic illness to find yourself SPENT.

Used up.

Drained.

EMPTY.

Some of us take on more than we should. It can be hard to say, “No“. Really we need to learn to say that. It’s a little word. Why is it so hard to say? Perhaps we don’t want to disappoint people. Maybe we strive too hard to be indispensable, needed, and purposeful.

The picture at the top of this post is one of my favorite places: Harper’s Ferry, West Virginia. I like to go during the off-season because frankly? Large groups of school-aged children on field trips is not my idea of a good day. I love the quiet. I love the sounds of nature amidst what you think at first is – quiet. I’m yearning for some reflection time at Harper’s Ferry. I asked Siri if I had any time in my calendar.

First time I’ve ever heard her laugh.

Re-fuel

Selye’s General Adaptation Syndrome explains how we may respond to life stresses. The first stage is ALARM and in it we are motivated to action. Men may experience “fight or flight”. Women default to “tend and befriend” (we reach out). For me, this meant getting help.

The second stage is RESISTANCE in which we cope as best we can. We may actually do OK for awhile too. If the stress doesn’t dissipate, however, we enter the last stage. EXHAUSTION. It can be really hard to bounce back from this stage. It is more than catching up on sleep.

The key is to recognize the stages while you are going through them and experiencing stress. Stress isn’t going to stop. I’ve looked for the stress stop button and it doesn’t exist. But… you click on the HELP button. Help may come in the form of friends or significant others. It may come in the form of faith. At times, for ME it comes in the form of getting alone and refueling. I know…

The price of gas is so high. Who can afford to refuel?

Maybe the better question is “Who can afford to NOT stop and refuel?

Think about that. Deciding when you’ve had enough and something has to give can only be determined by YOU.

Disability and Independence

I work so hard to be independent. But being independent doesn’t mean you refuse to ask for help. I grudgingly accept help from others who extend it without my asking for it. I’m trying to get better about graciously accepting it. I’m discovering that I can be independent and still need help. That sounds contradictory, doesn’t it?

I can do all I can to work independently, interact with others independently, and take care of my needs independently. However, when I dropped a baggie of paper clips on the floor in my classroom, far away from any desk, wall or chair that I could use for support, I had to ask for help. My service dog, Chloe, can pick up small things but should she swallow one in her exuberance to help, I consider the potential consequences too high.

So I asked for help. Within 30 seconds every paperclip was picked up and “paper clip picker-uppers” all thanked. It was painless. By doing so I did not undermine my efforts to be independent.

One of the lines of Browne’s song is, “Trying not to confuse it with what you do to survive”. Don’t confuse the need to ask for help with losing your independence. We all need help. It is how we survive. Are you running on empty?

Refuel. That means different things for different folks. You have to do so! Your trip isn’t over…

Denise Portis

© 2013 Personal Hearing Loss Journal

When Lightening Strikes TWICE

Wendi, husband Dave, and daughter Paige at a Hearing Loss Association Convention
Wendi, husband Dave, and daughter Paige at a Hearing Loss Association Convention

Hearing Elmo welcomes, Wendi Tirabassi Kast, fellow blogger and cochlear implant buddy. Wendi writes at “Sudden Silence” (http://suddensilence.wordpress.com/). I have been a big fan of Wendi for years now. She writes about LIFE – life with hearing loss and cochlear implants. Life with other kinds of struggles – but her posts remind me that this is LIFE. Her positive attitude and quirky sense of humor connects with me – and I think will with you! You should check out her blog – she frequently updates and every read is worth the time to check in!

In 1993, when I was 28 years old, I lost all of the hearing in my right ear.

 I grew up with a hearing loss that was discovered when I was four years old.  I never expected to lose more hearing; nobody knew why I lost some of my hearing to begin with, but a high fever from roseola was what we suspected.  (Knowing what I know now, I would also suspect the antibiotics used to treat it back in the mid-1960s.)  I always thought my hearing would stay the same; in fact, I never really gave my hearing (or lack thereof) much thought at all.  I treated my hearing aid like I did my glasses … just an aid to help me with one of my senses.  I certainly never thought I might lose all of my sight some day, so why would I think I might lose all of my hearing?

 Finding out that all of my hearing had vanished virtually overnight, for no known reason, rocked me to my core.  I was absolutely devastated and terrified.  Suddenly a whole host of worries was presented to me, including the possibility of going completely deaf someday.  I woke up terrified every morning, wondering if I would lose the rest of my hearing that day.  I lived in the hearing world, not the Deaf world.  I didn’t know sign language; none of my family or friends knew it.

I spent two weeks without my hearing aid, because I wore the aid in my right ear and it was suddenly unaidable.  They made an ear mold for my left ear and ordered analog bi-CROS hearing aids for me.  While I waited the two weeks for my left ear mold to be completed, I had to navigate my hearing world using nothing but the hearing that remained in my left ear.  I did word processing for an industrial parts supply company; I could still type and do my job, but communicating with my coworkers was very, very difficult.

When my new ear mold and hearing aids were fitted, I was weak with relief.  Things sounded normal again.  The bi-CROS aids picked up sounds from my now-deaf right side and transmitted them to the left.  My hearing remained stable; I slowly began to stop worrying and started taking my new level of hearing for granted again.  I mean, this couldn’t happen to the same person twice, right?

Wendi with daughter Paige at her baptism in 1994 after she lost her hearing.
Wendi with daughter Paige at her baptism in 1994 after she lost her hearing.

When I realized the hearing in my left ear was getting a little strange, in early April 2008, I chalked it up to an illness.  It was that same kind of faint ‘hearing things from the bottom of a tunnel’ type of hearing that I get when I’m fighting a fever or virus of some kind.  I wasn’t sick but still assumed I was on the verge of something.  Well, I was … but I was on the verge of total, profound deafness, not a virus.

My husband scheduled an appointment with my otolaryngologist.  The day before my appointment, I woke up and realized I was completely deaf.  I could not hear anything.  My teenage children were leaving for school and I tried to keep it together until they left, but I was so scared.  I burst into tears in front of them, wailing to my husband, “I don’t want to be deaf!  I can’t believe I’ll never hear you guys talking to me again!”  I was completely hysterical.

Well, I gave in and let myself grieve.  It was only a few days before I realized I could only do so much crying and feeling sorry for myself.  I was still sad and scared, and I used my blog to express my feelings during this time.  But I also decided I had to move on and decide how I was going to live my life as a deaf woman.

My first concern was communicating with my family.  I had remarried in 2002 and my husband knew some sign language, so he began teaching signs to me and the kids.  We rented DVDs, bought books, and learned to fingerspell the alphabet.  We never did learn ASL but we learned enough signs to communicate and get the message across.  My speech reading skills kicked into high gear, and these really saved me.  My family was very, very patient – they made sure to face me, to speak at a rate that was easy for me to lip read, and would repeat words or fingerspell until I got it all.  They never said, “Oh never mind” or “It’s not important.”  They knew I wanted to be part of the conversation, important or not.

After a few big scares, my husband put up mirrors around my desk so I could see if someone was approaching from behind.  (It’s pretty terrifying to suddenly feel a hand on your shoulder when you aren’t expecting it!)  We ordered a free TTY from the state and got a flashing light for the phone.  I used online relay for phone calls as well.  I already had a bed shaker alarm clock and, of course, we were already using captions on the TV.  (My husband has a hearing loss as well so we both use these accommodations.)

I found out that I qualified for cochlear implants, and began the process of testing and insurance approval.  My hearing tests were easy; I sat in the soundproof booth, listening to nothing, until they opened the doors and said I was done.  I asked if I could get a cochlear implant in each ear at the same surgery.  Although it wasn’t done very often, they said it was no problem as long as my insurance approved it … which they did.  The whole process was quick:  I had my testing in May, my insurance approval in early June, and my simultaneous bilateral surgery was on July 22, 2008.

Wendi's cochlear implants from the back
Wendi’s cochlear implants from the back

On August 20, 2008, the hearing world came back to me.  The sounds that came into my brain that day were nothing like anything I’d ever heard before … but it was sound and I was speechless with delight.  If someone had told me back in 1993 that someday I would have little computers in my head, and I would hear sound again in an ear that hadn’t worked since before 1968, I would’ve just laughed.

As my brain learned how to hear with my new cochlear implants, my tinnitus faded away to nothing.  Every day, I asked my family to help me identify what I was hearing until finally I could identify sounds on my own.  With each mapping, things sounded more and more the way I remembered them.  I heard the voices of my husband and children, music, my cats meowing and my dog barking.  One day, as I was leaving the audiologist’s office, somebody asked me for directions.  They were behind me, and I heard them clearly without lip reading!

It’s been over five years now and I never, ever take what I hear for granted.  It’s been gratifying to know that I can deal with my deafness even if something happens to my CIs someday.  But every day that I wake up, put on my processors and hear the rush of sounds once again, I am thankful, amazed and humbled.

♫♪ Gloom, DESPAIR, and Agony on Me… ♫♪

I dunno... maybe it was the hound dog I fell in love with?
I dunno… maybe it was the hound dog I fell in love with?

I have a confession to make. I loved CBS’s “Hee Haw”. Growing up I had three television channels. Thank goodness CBS was one of them. I’d list everything I loved about “Hee Haw”, but frankly I loved EVERYTHING about “Hee Haw”. I’d be listing instead of posting! Some folks hated it – even some of my siblings. But I was a true fan. I loved all things musical, even the “Lawrence Welk Show” and the “Donnie and Marie Osmond Show”. Go figure.

One of the weekly skits was done by a quartet (sometimes trio) of regulars singing “Gloom, Despair” written by Roy Clark and Buck Owens. It is a “right cheerful song” – <BIG GRIN>. Here are the lyrics:

Gloom, despair, and agony on me Deep, dark depression, excessive misery… If it weren’t for bad luck, I’d have no luck at all Gloom, despair, and agony on me…

If you’d like to listen to the lively tune, CLICK HERE.

Now that I’m in my late 40’s and have some “life” tucked under my experience belt, I hum or burst out in song far more “Hee Haw” songs than Lawrence Welk or Donnie and Marie tunes.

If It Weren’t for Bad Luck

Have you ever felt that “if it weren’t for bad luck, I’d have no luck at all”? Have you ever felt as if you were facing “deep, dark depression”? I suppose if I had to pick ONE constant theme in various emails that I receive each week from readers, it would be that people with disabilities, folks living with chronic illness, souls who live with invisible illness… deal with depression. It can be mild forms and only a sporadic nuisance. Maybe it is something you deal with on a daily basis, however, and a more chronic and constant issue for you.

I’m big on citing scholarly research about various topics. However, depression is so closely linked with various disabilities and illnesses, that there are simply to many studies to choose from for this post! I, too, struggle with depression. Gloom, despair, and agony… well OK, maybe not that last one – grin!

Something I’m having to learn to deal with is that I also cannot take many medications available to some who struggle with mild, moderate, or major depression. Dizziness and vertigo are the #1 side effect listed by most – if not all. Having Meniere’s disease can complicate things. You already know I fall a lot. However, I also lose consciousness a great deal from the fact that my head makes contact with something else on the way “down”. Seven mild concussions in five years means that I have to traverse my life carefully and methodically. I have to make decisions to lesson my chances of getting dizzy and falling. What’s a person to do if medications increase your risk of other problems – like falling?

Medications are not the only way to treat depression. As a matter of fact, I believe research shows that best results occur when medications are coupled with cognitive-behavioral therapy. But if taking medications are not an option for you, what can you do? You do all you CAN.

1. Therapy

Talk with someone. If insurance or finances do not make this a great option for you, reach out to folks who may have training in various faith-based arenas like churches or community centers.

Unload on a trusted friend. But do it. Reach out.

2. Self-help books

You can’t go into a bookstore without finding that “self help” books evidently are big sellers. Some of them are actually written by people with real expertise, however. Do some research… find out what is good (not necessarily popular).

3. Join a support group

In a digital age, there are even support groups online. This can be great for people with schedule concerns or privacy issues. There is something pretty special about discussing topics of concern with people who live what you are living. Do you prefer meeting face-to-face? Check out your local library and see what groups might be meeting there. Check with a county commission on disabilities to see if there are area support groups. Consider starting one yourself!

4. Try an “alternative” option

Complimentary and alternative medicines have brought us to a place where meditation, chiropractic medicine, acupuncture, and biofeedback are options for some people. Even herbal remedies for things like mood and depression help some folks. Do your research. Talk to your doctor. There is evidence these avenues have helped people!

Not sure if your feelings of depression are something that actually needs to be addressed? Few problems just go away on their own. When you live with disability or chronic illness, depression can creep into the picture. Psychologists will tell you that it is a co-morbid diagnosis for many who have some OTHER diagnosis. Deal with it. Find something that works for you.

Comments and feedback are welcome! You are not alone.

Denise Portis

© 2013 Personal Hearing Loss Journal