Category: Kyersten

Not-So-Fun Life Lessons on Vacation

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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


Insecure Foundation?

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Kyersten and Chloe at the "Candle Barn" in Bird-in-Hand, PA

Spring Break! My entire family was on “Spring Break” last week with the exception of ME. As this was Kyersten’s last Spring at home for awhile she was determined to do something “fun” everyday. Friday, she and her daddy had planned to go to Lancaster County. Since I DID have Friday off, I invited myself along.

Two of our favorite places to go in Lancaster County are Bird-in-Hand, PA and Intercourse, PA. (At the latter, my daughter always tries to talk me into a t-shirt that says, “I love INTERCOURSE!” Let me think for a moment. Umm. NO!!)

We enjoy walking around the shops, and my husband was thrilled because on Fridays the Farmer’s market is open as well! Next to and ABOVE the area where the main Farmer’s market is located, are some neat local shops and antiques. Chloe and I found a rickety, old staircase to the top floor and carefully made our way UP.

When we made it to the top, I noticed that Chloe was lagging (walking behind what is a proper heel) which is something she just NEVER does. Her problem is “forging ahead” on a normal day! So I looked back to remind her to heel and noticed something. Her legs were shaking so badly, I could see the hair on her legs and stomach trembling. (What in the world?) Something had her spooked, but I couldn’t tell what it was. I patted her on the head, and asked her to heel again. As soon as I took a step I knew what had her rattled. (Now that I was paying attention… that helps! GRIN) The old, creaky, wooden floors had a lot of “give” and groaned and moved under our weight. I’m sure she could hear it AND feel it! I thought for a second and then decided to stand next to her and shuffle around, tap dance and “hop” standing next to her. At first she dropped like she’d been shot and lay trembling on the ground. I kept talking to her softly and continued to erm… ACT LIKE AN IDIOT. I’m sure anyone downstairs probably thought the world was coming to an end! Five minutes and 150 calories later, Chloe sat up and watched me with a tentative tail flop. Ten minutes more, with a more normal volume and another 150 calories burned, I found her standing next to me with tail wagging like crazy – simply thrilled that  I was inviting her to dance.

Chloe was afraid. The foundation beneath her had to much “give” and groaned and complained at our movement and weight. She wanted to STAY PUT. It took a more confident friend to convince her that all was OK.

Feeling Insecure?

At some point you are going to be either the trembling pup, hugging the floor with nails dug in and eyes wide as saucers, or you will the confident friend who gently persuades you to “get on livin’ it”.

I can’t think of a time when I felt more unnerved than when I felt as if my very foundation was wobbly. You count on your foundation to “HOLD”. It is from a solid foundation that one can build and grow. What do you do when your very foundation is creaking and groaning? How do you “shore up”?

I’ve not made it a secret that I am a person of faith. I believe that God created everything and remains very “HANDS ON” with His creation. I believe that we BLEW IT. Because we are all sinners and in need of a Savior, God sent His one and only Son. Jesus died for you whether you wanted Him to or not! Salvation only comes through believing and accepting that free gift. Any other foundation is going to fail you.

People screw up. They are going to disappoint you.

Careers are temporary. Someone younger, smarter, better looking, and who will work for LESS is going to come along.

Community service is great! Volunteering and making a difference in the life of someone else proves you are someone who LIVES what they BELIEVE. But you aren’t going to be recognized each and every time. “Man” or “Woman of the Year” is only a plaque that gathers dust.

You may be healthy. Yet that can all change in a day. Disabilities, disease, and suffering are something all of us will experience is one form or another.

Life can be very hard. Life can also be very… VERY good. But what happens to YOU when life is hard? What does your foundation feel like? Will it hold?

When I am FLAT ON THE FLOOR terrified to continue, I often turn to prayer and scripture reading. Sometimes God sends along a friend who will tap dance, hop and gently persuade me that all will be OK. Perhaps they’ve lived the same thing and came out … better.

You know? Chloe left that upstairs shop a different assistance dog. She was confident about that next step we were going to take. (Denise danced and hopped and didn’t fall through the floor!) We made our way back to the Farmer’s market to find something yummy to eat. I’d burned 300 calories ya know…

Scared to go on? Perhaps you need to rest awhile. Rejuvenate. Maybe you need to do some introspective reflection. Does your foundation need some repair?

Found someone hugging the floor? Don’t preach at them. Don’t ignore them either. Pray for them. Let them know you are there. Share your story. Tap dance.

After all, the Amish are outstanding carpenters. That floor is going to hold.

Denise Portis

© 2010 Personal Hearing Loss Journal

Braille Menus

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Kyersten has always loved the outdoors... here she is on Lookout Mtn. in Georgia.

Kyersten, my “going on 20” daughter and I, went to Baltimore yesterday. She had a field trip she had to complete in order to earn some extra credit in her 200 level zoology class that she is taking. This has been a TOUGH class for her and she earnestly reasoned with me why she so desperately needed the car to go the National Aquarium. She can be pretty convincing. I had not been in awhile, so invited myself along so that I could spend some one-on-one time with her. Perhaps since we’ve recently visited some colleges on her “short list” that she will be transferring to next Fall, it was still keenly evident to me how precious little time I have left with her before life really changes! She was very willing to endure my company and cheerfully agreed (even before I promised lunch out!).

The aquarium is a great place to be with a CI and working dog. There is SO much to hear, and it can be a great place to practice using some of my special programs like “BEAM” to hear just Kyersten in a din of NOISE. It is good for Chloe, for we do not frequent really noisy places out of habit. It is good practice for her to stay calm and focused amidst all the “merry mayhem”. Towards the end she was wagging her tail at every squealing group of school children, and even met another service dog. Butch was a HUGE black lab that was built like a tank. He was very “lab-like” and friendly. He and Chloe said a brief hello and went on accompanying their partners. Chloe was much more relaxed after that – smile. A harmless moment of flirtation is enough to put the wag in the tail of my hound dog!

A Dolphin Show can be really noisy and tough to hear at with all the echo! Doesn't keep it from being REALLY FUN!

Lunch at the Cheesecake Factory

I gave Kyersten the option of several places to eat there in the Inner Harbor. She gave me one of those “duh” looks that 19-year-old’s are so good at… She loves cheesecake, so I really didn’t need to ask her! She eats a pretty light lunch there in order to save room for what is important. CHEESECAKE. Smart kid, yes?

Even though it was 12:30, we didn’t have to wait in line at all. Perhaps because it was a weekday? The young man asked us to follow him back through the restaurant. The area he led us to looked out over the promenade and one wall was all glass. I made the mistake of glancing around too much and caught site of the ceiling fans in my peripheral. I sort of “toppled” with a decided lack of GRACE into my chair. Kyersten just grinned at me, as she guessed my problem. I situated Chloe under the table, and turned to look at the young man who seated us.

“May I bring you a Braille menu, ma-am?” he asked politely.

I could see Kyersten’s eyes widen across the table.

Without missing a beat, I pointed to my CI and said, “Oh no thank you! I’m fine with this one” (and then pointed down to the regular novel-length menu on the table).

When the young man walked away, Kyersten rolled her eyes and said, “OH BRUUUTHER!”

I just grinned and said, “Hey! He was polite, and I do have a service dog with me. I toppled into the chair… for all he knows I don’t see well!”

Kyersten just looked at me, and looked at the cochlear implant on my head decorated in gold, red and green jewels for Christmas. She then looked at the opposite ear with the prominent BTE hearing aide and bright red ear mold.

She didn’t say another word, but that 2nd eye roll said it all.

Not the first, won’t be the last!

This was not the first time I’ve ever been offered a Braille menu before. I have friends with low-vision or are legally blind. I appreciate the fact that many restaurants have Braille menus!

I also appreciate it when restaurants train their employees “enough” that they have learned to recognize someone with a special need. Oh sure! They might not identify the need correctly, but I truly believe it is the thought that counts! When I have students in my ASL classes do projects like “go to the mall” without your voice and only sign, (“Deaf for a Day“), many come back to class and tell me that they were offered a Braille menu at the food court at various places. We discuss how they handled this and what this may mean.

Hearing Loss is Unique to Each Individual

Hearing loss itself is unique to every individual. The disability is not a “cookie cutter” change in hearing. I get some responses from people sometimes that do not like that I use the “disability” word. I’m OK with that, and respect their opinion and choice to not identify with that word. Personally, I am OK with admitting that I have a disability. I believe it does not strip away any power, self-esteem or pride to admit that. I am NOT, however, disabled. Yet, my disability may not be anything like that another person with hearing loss experiences.

I have Meniere’s disease. I do not meet many people with hearing loss who have Meniere’s. I am bi-modal (one CI, one hearing aid). I am more likely to meet bi-lateral people if I meet someone with a cochlear implant now! (Which I think is JUST TERRIFIC!) What they experience in their hearing loss is different than what I experience. Some people use a “bit of sign”, while others are culturally Deaf and do not use their voice at all. Some people have hearing aids that they do very well with, while others put their own in a drawer and “fake it” through life. I hear very well in quiet to “medium-noise” environments. I don’t even have to speech read anymore thanks to the wonderful technology of my Nucleus Freedom! However, in really noisy environments I do have to speech read even when using special programs. Other people with cochlear implants may do better in noisy situations.

I have had the privilege of participating in various forums, workshops, conferences and conventions. I have seen people with hearing loss really become defensive with other people with hearing loss. You know? (scratching head and really ponderin’ on that) I just don’t get that! So what if someone hands you a Braille menu! Were they genuinely trying to help? Does it matter that they don’t realize your hearing loss is different than their own? Perhaps they do not understand that what works for them may not work for you. Why come unglued and act defensive?

Here are a few real-life examples I have observed:

1. A person with hearing loss walked up to another person with hearing loss and pointed to their wires connected to their body-worn processor for their cochlear implant. “Why on earth would you wear something like that with all those wires showing?” Oh yeah… that produced a positive response!

2. “Bling” on cochlear implants and hearing aids are often disdained by other people with hearing loss.

3. “Why would you go with THAT company for your CI? The one I went with is so much better and their success rate is much higher!” (Should we just be happy someone is HEARING AGAIN?)

4. “I’m sorry, I didn’t catch the last part of what you said”. “What? You have a cochlear implant now, shouldn’t you be hearing better than I am with two hearing aids?” (Yeah… as long as you aren’t talking while crunching raw broccoli, bozo…)

Let’s face it! We will likely meet someone else with hearing loss who has chosen different techniques, coping mechanisms and technology in order to live life to its fullest. They may hand us a Braille menu. Our response should be positive… and let them know we genuinely appreciate their attempt to be helpful. An angry retort, thrown “menu”, defensive attitude and “hearing loss sermon” will not bring anything positive out of their mistake. Relax. Smile. Educate in a positive way.

Denise Portis

© 2009 Hearing Loss Journal

 

On the Road Again…

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Denise and Chloe at Covenant College
Chloe enjoyed visiting these colleges, and "tolerated" the long drive.

This past Thursday, my daughter and I headed out on a road trip to visit two colleges on her “short” list. Bryan College is in Dayton, TN, and Covenant College is on Lookout Mtn, just over the TN border in Georgia.

Traveling with a hearing loss can be intimidating, but honestly I’m not new to this! Not to hearing loss, and not to traveling with one. In the past, knowing I had to travel would keep me up nights and worrying about the details weeks in advance. Hearing loss is such a part of my life, I do not really remember life with normal hearing.

Things that Help

I think one of the more obvious things that help me when traveling with a hearing loss is that I make my invisible disability – visible. From wearing bright “bling” on my cochlear implant (currently sporting Christmas “bling”), to wearing a bright red ear mold on the hearing aid in my other ear, I really try to make my hearing loss noticeable. I wear my hair up, and I pay attention. I hear really well with my CI, but I’m also wise enough to understand that late at night after I’ve become fatigued and am standing in a large cavernous, echo-producing foyer of a motel, I may have difficulty hearing! So the reliable, noticeable reminder of my disability only comes to my aid when checking in and reserving a room. Almost instantly, front desk employees “change tactics” and are careful to point out where to sign, wait for me to look up to continue speaking (although I actually hear well when not looking now), and are careful to point for directions instead of simply telling me where to go next.

People must travel with assistance dogs regularly enough now that I never am asked what Chloe does or why she is with me. She is less trouble than “some people’s” kids, so she is only help to me when traveling! Thankfully, at Fidos For Freedom, puppies travel with their trainers quite a bit to expose the dogs to motels, airplanes, etc.

hug
Kyersten and Chloe at Rock City for a short "break" to visit a tourist attraction

When stopping for gas, thankfully one can easily pay at the pump. The few times I had to go inside to grab a bottle of water for Kyersten or Chloe, the “visible reminders” served the same purpose at these places as well.

Why do I Believe Visible is Better?

I know plenty of people who choose to keep their invisible disability hidden. That is certainly their choice, and I am very supportive of “whatever works” for each individual. It is my personal opinion, however, that being up front about your hearing loss is only in your best interests. I have heard some folks say that they keep their cochlear implant or hearing aid hidden because they do not want to be treated differently. However, it seems these same individuals are very vocal in their criticism of people who continue to forget to get their attention before speaking, failures to set up assistive listening devices in conferences or meetings, or in disdain rebuke those who have accents, are gum chewers, mumble, or are soft spoken. I believe that in keeping a visible reminder that you do not hear the same way others do (with amplification, speech reading, or cochlear implant technology), others are reminded to communicate more clearly and with better speaking skills than they might otherwise employ.

chloe1
Chloe at Covenant College waiting for the Admissions Office to open.

I believe that by being visible, I have in many ways become more approachable to others and are more accepting of who I now personally. The moment I decided to become transparent about my hearing loss, my blood pressure numbers began to come down and I became more relaxed and at peace with who I am. Think about it this way… what is your demeanor, attitude, and feelings when in the process of trying to hide something?

loved the wildlife
Lots of critters in the mountains of Tennessee! I had to keep Chloe "tight leashed" to keep her from forgetting her job when on a trail!

Hoping mom doesn’t notice a missing cookie from the cookie sheet that just came out of the oven and are desperately trying to lick the last bit of chocolate chip from your fingers?

Have you ever lied and hoped no one would ever discover the truth? One often has to cover one lie with another… and then another.

Have you ever played hide-and-seek? Your heart accelerates as the person who is “it” draws closer to your place of hiding. You may even hold your breath in an attempt at keeping your hiding place from being discovered!

I believe that deliberately trying to hide something like an invisible disability eventually produces anxiety, unease, and produces a fear of discovery. These are all negative feelings! They do not provoke positive change and influence.

In spite of my bling and wearing my hair up, I still take some folks by surprise. Let’s face it… not everyone pays attention to detail. My husband is one of those people who I can greet at the door when he gets home from work and he will never notice I cut my hair 5 inches or am wearing a new outfit. (I don’t buy new clothes very often either!). Terry just doesn’t pay attention to visual detail. It always gives me a bit of a thrill to see the look on someone’s face who did NOT notice my visible reminders, when I’ve finally had to point to my mouth and say,

“I’m sorry. I missed the last part of what you said because of all the noise in here. I’m deaf and hear with a cochlear implant and just could not make out what you said. Could you repeat that please?”

The person’s mouth drops open and they totally FORGET what they said. Instead they exclaim, “Wow! I would have never known you were death! (Intentional mis-spell here in loving attention of all the times I’ve heard this instead of the correct identification). You are so… So… NORMAL!”

Another reason why I do not want to try to hide my invisible disability, is because I tried “the other way”. Do you know what I felt when something I tried to keep hidden became known to someone? Shame. That shame and embarrassment led to poor self-esteem and anger.

Again, I’m not “preaching” at others to adopt what I have done in order to bring awareness to their hearing loss. I really do believe that each individual must do what work best for them.

This is Who I Am

I am comfortable in my own skin. I don’t believe God reached down and caused me to become deaf. I also don’t believe God is “hands off” and set the world in motion just to sit back and watch everything happen. My life is not God’s Youtube. I believe everything has a purpose. Every good thing, and every bad thing happens in order to grow me. I really believe that! I make choices every single day. Sometimes the choices are small and may only involve what kind of tea bag to grab in the morning. However, many choices involve shaping and molding our character to produce a unique individual equipped to make a difference where I happen to be planted. My choices affect my attitudes and future decisions.

Sometimes our decisions are processes. For example, I did not “wake up” a secure and confident late-deafened adult. I “messed up”, acted out, hid, grieved, griped and smacked people. This was a process God allowed me to experience. The process grew me. I don’t regret the process even though I shed a lot of tears.

I’m still a work in progress! Just because I’m 43 and have been an “adult” more years than I was not, I continue to grow, mature and evolve. I don’t care how old you are, you still have a great deal to learn! We are ALL works in progress. Heck. If I was a “finished product”, God would just take me home!

Denise Portis

© 2009 Hearing Loss Journal

chloe2

P.S. If you do NOT like attention being drawn to your disability, I do not recommend being matched with a hearing assistance dog! People notice the dog as if it were a flashing neon sign!

Rain, Little Debbies, Saving a Turtle and Home & School Connection

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Rain. Sigh... what's a dog to do?
Rain. Sigh... what's a dog to do?

Rain

The farm girl from rural Colorado would never complain about the rain. I don’t mind days like today as it saved me from having to water my flowers, and sweep the deck. I do get a bit whiney when it rains day after day, for I’m usually crawling around the house by Day 3. As it is suppose to be sunny this weekend, I find I’m in a good enough mood to write about the rain in a positive way! I “met” another person with Meniere‘s online through our blogs about 2 weeks ago who fears weather systems as much as I do. It seems very little is “the same” about symptoms of Meniere’s.

What to do with a dog when you can’t go outside and chuck balls for them to chase? Our poor Elkhound, Tyco, really looks forward to his daily scrambles after the ball. He and Chloe have been looking forlornly out at the deck.

Little Debbies

I had to make a quick run to the grocery store this morning to tide us over until my bigger grocery shopping trip on Monday. You know how you need one more trip to get the things you forgot? And I shop with a LIST! How does that happen?

A member of my family is going on a picnic Saturday, so I had written down Little Debbies. My dad worked at the factory in Chatanooga that made the creme that goes in the oatmeal cakes when he was in college! How is that for a random tidbit of Intel? Anywho… I bent down to grab the box, and had a major head rush. Everything went black for a second, so I did what any person with Meniere’s would do… I dropped everything and sat. Chloe sat next to me in the aisle and we both looked at that box. She was wagging her tail, I think in part because she knew I was going to need her help. She is always so eager to help out, it is almost comical! I used the cart to stand, and then pointed to the box and said,

“Chloe… fetch box”. She checked to make sure that I was pointing to the box, and went to retrieve it. Little Debbie boxes are kind of heavy (all that CREME ya know?) and the cardboard is cheap so it gives… it isn’t stiff. It took her a couple of tries, but she finally got it up off the ground and into my hand. Her tail wag indicated she knew she had really accomplished something. When I got home, I tried to take a picture of her retrieving the box, but Tyco got in the way. Oh well… you get the idea…

Chloe retrieves the Little Debbies
Chloe retrieves the Little Debbies

Saving a Turtle

I’ve always called Chris, “Eagle Eyes”, because he has always had a knack for spotting things the rest of us seem to overlook. Last night he went out to the front to bring the trashcan back around back. He saw some birds swooping down on something in the grass. He went to investigate and found this turtle. He was covered in thick mud and hightailed it across the cul-de-sac. Have you ever seen a turtle “high tailing it”? Me either! This one could MOVE. Anyway, we carried it two blocks south of us to the creek and set it free. Thank goodness for Chris’s “Eagle Eyes”, for this guy looked in bad shape as he was so far from water!  DSC02869

Home & School Connection

Kyersten has worked at the Home & School Connection for three years. She looks so cute in her little apron! She doesn’t really like to be called “cute” at 19-years-old though. At least… not by her mother. It’s a very cool store. There is one in Hagerstown as well. If you’ve never been, you’ll have to drop by… and at the very least bug Kyersten! They sell some pretty cool things. I almost bought a praying mantis set. They send you some praying mantis eggs and everything! I decided against it when I saw what they ate. How in the heck do you catch aphids for a praying mantis?

Kyersten looking cute in her apron
Kyersten looking cute in her apron


Denise Portis

© 2009 Hearing Loss Journal

The Vest is Really Always “On”

Published on by hearingelmo3 Comments

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All Work and No Play?

Chloe doesn’t wear her vest in the house, and I sometimes take her to places where the “vest” stays in the van. Harper’s Ferry is one of those places… although I make her wear it if we are there during “peak” season because the crowds are so large. Lucky for us we live close enough that we go frequently, and normally NOT during peak season!

It’s good for her to “just be a dog” sometimes. And yet… Chloe doesn’t “turn off” her training when she does not have her vest. On the contrary, she does MOST of her hearing alerts when her vest is hanging up by the front door! I work 4 days a week from home, and so when the phone rings, kitchen timer beeps, or doorbell dings, she alerts me to the fact and “takes me there”. Even at Harpers Ferry we discovered she still realized I couldn’t hear well and would alert when “vest-less”. It was at Harpers Ferry that we first realized that she alerts the same and takes me to whomever calls “Denise” OR “Mom”.

Chloe gets plenty of playtime, but she really seems to “get” that regardless of that vest, I need her ears.

I Feel NAKED!

There have been a few times when I left Chloe at home and went to something without her. When my daughter (who has a horrible phobia of needles) went to get blood work prior to starting college, she needed my undivided attention. As a matter of fact, she not only needed my attention, but also both hands and a knee to keep her propped up after swooning. The girl hates needles!

When our family went to Catoctin Wildlife Preserve, I wisely left Chloe at home. It’s not a great idea to take a working dog to a place where things would think she was “dinner”.

On these rare occasions, I have felt positively NAKED without that leash in my hands. I am so accustomed to her presence and help, I feel very strange indeed to be without her. My husband is always glad to have her along as well, for he gets a little irritated when I slip up and tell him to “heel“.

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It’s Great Knowing She Likes to Work

We were at the bank today taking care of some business for our chapter of the Hearing Loss Association of America. As I sat waiting for the woman I needed to see, Chloe stayed in a nice down/stay at my feet. We finally were able to go back and see the woman we had an appointment with, but were stopped by a man waiting in line. He had big tears in his eyes and he told me how beautiful Chloe was and, “… she just adores you! She watches you non-stop… every move you make! She only looks away when someone new walks into the bank and she flops her tail at them and then turns to stare at you again!”

Chloe loves people, and loves to work. That has to rank right up there to being one of the most important things about a working dog… that they love to work.

My “Spiritual” Vest is Always “ON”

Hopefully I’m a person of faith who lives what I believe even outside of Sunday morning services. I try to be “real” and genuine. My faith has become such an ingrained part of who I am, it’s impossible to separate the two. I get some “good natured flack” from time to time about mentioning my faith on the blog so much. However, I’m here and functioning as well as I do as a direct result of my relationship with Christ. I can’t pretend to be something I’m not, and I’ve completely HIS.

Sure, sometimes my mouth negates the fact I am a person of faith. When I sin? It’s ALWAYS with my mouth. My prayer every morning before my feet hit the floor is “Lord, guard my tongue today!” I pray He can use this big mouth for some good. I’m grateful He does not call the ‘qualified‘, rather He ‘qualifies” the called. May I always live like my “vest” is on!

My Teacher Hat is Always On

I guess because I’m a teacher, it’s really hard for me not to be in “teacher mode”. The kids tease me sometimes about making “everything into a learning session”. From correcting their grammar when speaking, to insisting on learning the history and background of a place we are visiting for the day, I end up in a “did ya know?” speech nine times out of ten!

Now that I’ve started back to school myself with the goal of eventually teaching on the community college level, that will likely get even worse. I’m working towards my Masters in Psychology. I noticed on the online biography “background” page, that I’m the only one pictured in my profile with a dog.  (smile)

She’s THAT much a part of my life…

Denise Portis

© 2009 Hearing Loss Journal

College for a Day!

Published on by hearingelmo1 Comment

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Chloe had a great time visiting a college last week.  She doesn’t mind car trips, and was pretty good in the motel as well!  (She loves elevators!)

Once on campus, I fought to keep her calm. Chloe’s weaknesses are MEN and “Teens”.  What is a college campus full of?  College guys, who all thought she was rather lovely too.  Oh my!  After a few corrections, she finally realized “Gee.  Denise means business!”  She loved the arena area (above),

because she was able to watch all the action from up high.  She had the best

seat in the house.  She totally ignores all the double-takes.

I’m so glad our church has a live band every Sunday.  The band, lights,

NOISE in the arena were not worth getting excited about, and she is

totally accustomed to my signing the songs.  Later during a meeting a

“boy group” of 3 young men came in to sing to the parents/visitors.

They came and crooned literally within a yard of her.  She slept

right through it.  I’m so glad this type of atmosphere is normal

for her!

Chloe was mildly amused when an admissions counselor asked

me if I was planning on transferring to the university.

I was not so amused.  (My husband and daughter were snickering,

however!)

Ah college… being there almost made me “miss it”!

Denise Portis

© 2009 Hearing Loss Journal

Nightmare Trip

Published on by hearingelmo3 Comments

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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

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

If You Want Me To

Published on by hearingelmoLeave a comment

Since I recently posted about getting my daughter, Kyersten, ready for college… I wanted to follow-up with a very special post.

Kyersten is an incredible young lady.  I realize I’m “her mom”, but those who know her can tell you that she is very special.  I really look forward to the coming years to see how she continues to grow and mature!

Kyersten has always loved sign language, and grew up as a wonderful CODA (children of deaf adults).  She was a big help to me prior to my cochlear implantation, and has been an interpreter in our church and served in deaf ministries for a number of years.  She has taken 5 levels of sign language, and frankly I can’t teach her much more than I have.  Like me, she recognizes and respects the differences between those who cannot hear and use sign, and those who chose to be oral like myself.  (I know sign and even teach it.  I don’t use it in my everyday life, however, as everyone I know has normal hearing).

She has had a tough week.  A great number of emotional things have happened, and she’s learned some very hard lessons about people.  I wanted to share a video she had taped this week.  The song is by Ginny Owens, and I’ve captioned it for those of you who do not hear well.  Enjoy!

Denise Portis

© Hearing Loss Journal