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 =)
(10 days shy of 19-years-old)
©2009 Hearing Loss Journal
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…
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.
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!
© 2009 Hearing Loss Journal
About four months ago I caught a nasty 24 hour virus. The only thing unique about this virus was the timing of when the symptoms appeared. I had my morning coffee and THEN became sick.
Now you have to understand that I’ve been drinking coffee for twenty-four years. After years of going to school and working I found that I was a 4-cup a day, coffee drinking addict. I add that last part because frankly, my son reminds me that caffeine is a drug every chance he gets. (Darn, those assigned research papers on drugs in 9th grade! Could I have known he’d take this information to his grave?) I always get out of bed before my kids. In part, the result that MY alarm clock (Chloe, hearing assistance dog) does not have a “snooze button”. When it’s time to get up she… well, makes sure I’m UP! I normally hit the “on” button as I walk past the coffee maker. Alternating between French Vanilla, and Hazelnut sugar-free creamers, meant my coffee was my favorite part of the day. I will admit that the fact I had some quiet time to myself during this morning period, also contributed to it being the favorite part of my day.
Nothing spoils “a favorite” like a virus. When a stomach virus’s symptoms hit after having only consumed your morning coffee, little else “reappears” other than that coffee! I won’t go into all the gory details, but suffice it to say that I can no longer even SMELL coffee. Being married to a psychologist, I’m assuming I’m experiencing psychosomatic symptoms. The reality is I may simply have a very good memory. All I know is that I can no longer drink coffee.
But when one is addicted to caffeine, (repeated for the benefit of my 18-year-old son who continues to remind me about common, over-the-counter and legal stimulants), one can’t just ditch the coffee and survive. Yes, I realize I might should have taken this opportunity to “kick the habit” once and for all. Frankly, I love curling up with a hot cup of “something” first thing in the morning! Desperate to find a quick and painless alternative “source”, I turned to green tea.
I love the fact that someone MY age can discover something new. Discovery? I love green tea. In fact, I drink green tea most of the day. After consuming approximately 4 cups of regular green tea, I drink decaf green tea the remainder of the day. In the four months I’ve been a tea drinker, I tried numerous brands and actually love them all. I do have a favorite, however, thanks to the Christmas gift of one of my students who happened to stick a few tea bags of Kirkland signature ITO EN into her “goodie basket”. (Thanks Sarahann!)
I received February 2009 Ladies Home Journal in the mail over the weekend. Saturday evening while trying to find something new to read before going to bed, I decided to curl up with the magazine (and a cup of decaf green tea of course!). The article, “The Healing Power of Tea” caught my eye. I learned that ANY kind of tea has health benefits, but green tea seems especially potent in protecting against some of even the deadliest diseases.
According to the article written by Paula Dranov, “… scientists are finding that drinking tea may keep your heart healthy, protect you from cancer, boost your body’s ability to fight off germs, strengthen your bones, prevent cavities and sharpen your concentration”. Evidently it lowers your LDL (“bad”) cholesterol as well as lowers the risk of plaque build-up in the arteries. It may lower the risk of a variety of deadly cancers, and boosts immunity to ward of bacteria and viruses… you know, the kind that make you throw-up your morning coffee! L-theanine seems to heighten concentration, and another antioxidant found in tea may stave off Alzheimer’s and Parkinson’s! Tea even strengthens bones, and prevents cavities as it contains fluoride.
Now that I’m a tea drinker? Well, basically I’m GONNA LIVE FOREVER!
Good can come from even nasty viruses.
Change can occur by design, but for me it is often because I’m forced to do so. Does that make me stubborn? (Hmm, scratching head and pondering that). I think I’m just a creature of habit. When change occurs in my life, it is usually because circumstances forced me to adapt.
No one ever asks for a disability. Whether congenital or adventitious, disabilities simply aren’t something one HOPES to learn to deal with in their life. I mean… life is hard enough! Yet, those I know with disabilities seem to be masters at learning to adapt and to change. That doesn’t mean it’s always done right – yet, change will happen. One must learn to do things a “new way”. Many times a person has to learn to ASK for help. Sometimes it means giving up some things you really loved, and learning to enjoy “replacement” activities instead. There are times you have to “take 5″ and just feel sorry for yourself – as long as you get back out there and embrace life when your “5″ are up!
I consider deafness and Meniere’s disease negative triggers. Yet the change wrought in my own life, has made me who I am. I am comfortable in my own skin, with all my gadgets and technology. I’m totally OK with being accompanied by an assistance dog, and I wear my hair up so that my cochlear implant and hearing aid are visible. However, I didn’t start out this way. At first, those triggers only caused me to isolate myself. I lived in a 24/7 pity party. I’m thankful for all I learned through HLAA and from a well-read Bible. Both were necessary and influential in my life.
Some people look at me like I’ve lost my mind when I explain I’d never want to hear normally (or walk a straight line). I like who I am. As I have not always “liked me”, I’m glad I can say that I do now. Change ultimately can bring a self-discovery of talents, skills, interests and passions that one never dreamed of before. With a little direction and “cheerleading” from those who have “been there”, change can be an easier transition for those learning to “ask those tough questions”. Why me? How can I cope? How can I work? How can I communicate? How can I ever be happy again?
The biggest plus to having a disability, is that one usually discovers what is really important. The things that use to “stress” me no longer do. (Likely, I have new stresses!). Life’s big picture sort of SNAPS into place when you have a disability. Family, friends, community, communication become really important. (Don’t believe for a second that someone who is deaf with a communication disorder cannot communicate. You simply aren’t listening!).
At times “getting there” is not an easy road. But the discovery of who I “am”, allows me to help others and make a difference in my own small corner of the world. Do you feel “change” coming? Don’t run from it. Stand still and let it happen. With the right attitude, support system, and even childlike faith, change can create very real and positive discoveries for YOU.
© 2009 Hearing Loss Journal
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?
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.
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.
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.
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.
© 2009 Hearing Loss Journal