Tag Archives: deafness

Remembering Sound

Saturday afternoon I had the chance to relax by putting up my feet, having a cup of Honey Lemon Ginseng Green tea, and finishing a book titled, Hands of My Father: A Hearing Boy, His Deaf Parents, and the Language of Love by Myron Uhlberg. Embarrassing to admit, but this book has been sitting on my shelf collecting dust for a while. However, this book was a great find! On a trip to the town library, I just so happened to walk-in on a day that they were having a book sale! I am most serious when I say this–some of my greatest reads come from library or campus bookstore book sales! 🙂 On that particular day, it just so happened too that I found $2 in my wallet (it’s rare for me to have petty cash.) The books were 50 cents each unless otherwise marked.

I am glad that I got to browsing the tables when I did. I picked up a Penguin Classic of Jane Austen’s novel, Mansfield Park, and found Henry David Thoreau’s, A Week on the Concord and Merrimack Rivers. I didn’t think much of Thoreau’s book, so I set it down and continued browsing through the autobiographies, in which I found the book, Hands of My Father. I can take a long time shopping, whether for books or groceries or clothes. I think, contemplate; I read the inlet book descriptions, compare prices or flavors of coffee creamers, and fashionably brainstorm new outfits. I even noted that while buying acrylic paint last week that I took more than what is probably considered a standard paint shopping time frame.

In books, I cannot impulse buy; so as I continue to read the back covers, I see a lady come in on the other side of the room and start a mass wave of book consumption, reserving the load of stacked titles in a small empty spot on a table next to the door. I just stood there for a moment to realize that if I didn’t make impulse decisions of two more books–completing my $2 worth–then there would be nothing left to make a decision on! Impulsively, I grab Thoreau’s book (still uncertain it is what I want, but since it was not marked in and unabridged, I figured if anything it could make a nice present…no library codes attached on the cover either!) Skimming the rest of the titles on the far side of the room, I find a sign language textbook and secured it with my other three titles. Just in time. The lady’s swiftness of book snatching had already found the table next to me.

Regardless, I left the library with four new books and the few that I had first come to the library to check out anyway. Jane Austen and Thoreau’s novels, I actually put to good use as it was the time when I first started experimenting with mixed media on my paintings. A friend borrowed the sign language dictionary, so her family can learn basic signs to communicate with me when lip-reading fails. They caught on finger spelling fast! The Hands of My Father, though the sincerest efforts to read the memoir were made often, got set on the shelf until a few weeks ago.

As I started Uhlberg’s memoir, I found the format unique. Instead of the typical “childhood to adulthood” format–in which most others are written, Uhlberg used his chapters almost like that of blog posts. Separate memories, unrelated to each other, yet having a flow…I found myself fascinated by the vast differences we are to each other, besides one common denominator: deafness in a family. Uhlberg’s childhood started during the Depression, then WWII and in the 1950’s. An 80’s baby, I lived THE 1990’s and saw a new millennium. He grew up in Brooklyn and got box seats with his father to see Jackie Robinson play for the Dodgers; I grew up in a small farm town in Colorado and went with my family to the “car races” that were held in a potato field with hay bails as the race track boundary lines. You get the picture…

The main difference (obviously) is that Uhlberg had Deaf parents. In his childhood, deafness was considered dumbness–you were deaf? You were considered dumb, unruly, unable to be and live normal like the hearing world; you were ignored or stared at when speaking in signs. Sign language was not even considered a language–there was no such thing as an interpreter. Deaf kids were not allowed to play the games or sports at school, because they had to make up for what hearing teachers considered “never being able to understand and learn” like the other kids. How could they when, even in the schools for the Deaf, sign language was prohibited?

In Uhlberg’s stories, he not only incorporated his own feelings and burdens of this living, but also what he learned from his parents experiences of joys, pains, communication voids and what it means to take pride in yourself without regard for those who think ill of your differences. His father was a great example of the latter in the list, although personally for Uhlberg, the transitions of going from being his father’s kid to having to be the adult in situations where interpreting was needed put a heavy burden on his shoulders. In my own instances, I am not in Uhlberg’s shoes, but like his father. I depend on my family for when I am in communication voids.

In the reading, it was his father’s questions that made me ponder. Born hearing, yet losing it at a small age, his father knew a few sounds. After full deafness before the age of four, he now wanted to remember those sounds. So he asked questions such as, What do waves sound like? And Uhlberg would try to explain, in adjectives, the sound of waves. I finished the book and thought of sounds that I hadn’t heard since high school: frogs croaking, birds chirping or crickets singing, the pitch of my flute, Muffy purring, a person speaking to me while standing behind me, soundtracks on a movie. Sounds just started to disappear and now when I “remember” them…it is just a memory, not a sound. Unlike Uhlberg’s father, deafness came slowly for me; I am thankful for this, even though complete silence is difficult; it’s lonely.

So I wait with anticipation. Deafness will fade away, like waves on the shore when the Sound of Jesus return is proclaimed for all eternity.

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Filed under Adjusting to NF2, Books and Movies, Family Times, Uncategorized

Sounds of the Soul

Something’s missing.

That is how I have felt these past few weeks. I don’t have to embark on a search party to find what I am missing, because I feel it deep down. Deep in the soul. I know what it is: it is music.

I think the feeling of void came flooding back when I was making a short list of important songs for my parents before they left for their trip. One song being an old favorite by rock band Petra, I spent a few hours one evening between email replies singing to oldies by watching music videos. I admit–I even watched my boy band. Yes, this is extreme music voidness if you find yourself reliving those junior high obsession heart-throb days. But there was no turning back; Plus One’s hit is forever, “Written on My Heart.” 😉

And so Easter morning arrives…yesterday was gorgeous. The sun shining as if radiating glory and proclaiming, “He’s Alive!” Not that Easter morning has to be sunny. Jesus is very much alive today as He was yesterday or will be tomorrow. That is the hope and joy of Easter. (Hebrews 13:8.) But the sun made it extra special to say the least and I was excited for worship that drive to church.

My excitement wore off as we started singing. I only knew two songs. Sure, I could read the lyrics on the power-point and could make-up tunes of how I thought the song sounded based on the tempo I was lip-reading (a bit fun, almost like imagining character voices in your head when reading books), but it is not the same. The void came crashing back and instead of Easter joys, my mind started meddling with self-pity.

The sermon starts and I am not getting much out of it, because there was no sermon notes left in the foyer, nor did they use the power-point unlike usual Sundays. My eyes are not lip-reading well that far from the pulpit, so I start thinking of music and my favorite Easter songs, such as “He’s Alive” by Don Francisco. Then in almost in demanding anger, I say in my head, “I want to hear music!” The music void.

I sit and think. Then it dawns on me, like the morning sunlight: My ears are dead and useless to me now, but one day, they will hear again. And what a sound it will be!!!

 

 

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Filed under Adjusting to NF2, Books and Movies, Family Times, Uncategorized

I didn’t finish…

I have to admit that while I am a Summer Olympic Games fanatic, the Winter Olympic Games definitely have a few personal highlights: figure skating, luge, curling (which was never aired this year at normal hours; I could never get myself out of bed at 3:30am to watch the event…sad) and a new fascination for Slopestyle skiing. Not being naturally talented at any of these, or any other events for that matter, my most common response while watching the performances went as such: “That’s INSANE!” Yes, pretty much insane, but this is what these athletes train for–the dream, the passion, the Olympic moment.

During these games, I realized that I sympathized with the athletes who had a hard time performing in their events–not being able to land their jumps and twists, coming in a split second short of being on the medal podium, the emotions of personal background stories of their own family losses…these moments remind you that even the greatest athletes are human. And while there were many memorable moments to celebrate in outstanding performance victories, I believe the greatest victories were evident from the athletes who struggled. They fell down, yet picked themselves up to finish their performance. It showed true determination. True victory.

I was most impressed by the figure skating performances. Now, I have a hard enough time standing and balancing on my own two feet as it is…so if shoes consist of having attached blades, wheels or anything that causes movement–such as skis or snowboards–I don’t touch them. But this was not always the case. Growing up, I did enjoy skiing (I learned to ski at age six and skied through high school years), a little snowboarding (until mid-college days when my balance turned for worse), rollerblading, ice skating (we had a frozen pond out in the back field or we used the ditch across the road), and roller skating (except the last memory, in which I took a fall at the YMCA center leaving me unable to get up on my own and a trip to the ER: thus, it confirmed that my days of moving feet business were over!)

ice skating

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Being somewhat a helpless romantic when it comes to either ballet or figure skating–and maybe combination that this Olympics, due to deafness, I couldn’t hear the figure skating music–I started to think of songs that I would perform my routines to in the event that I was a figure skater. For a short program, because judges score on technical activity, I thought fun songs, such as “I have Confidence” from the Sound of Music or “Linus and Lucy” from The Peanuts would be lively. And the long, free skate program: “Moonlight Sonata” by Beethoven! It is a deep emotional song…a performance could be so lavishing.

I did perform “Moonlight Sonata” my senior year of high school; not in a free skate performance, but for my senior piano recital. I had been playing piano since the first grade. I had memorized pieces of Bach and Beethoven in the past, but “Moonlight Sonata” was my last. I memorized the music, practiced until I felt secure in the music, and set out for my performance. I am not one for audiences. I tried to calm my nerves. The piano faced the wall. I was staring in white. I started to play with shaking hands.  “Moonlight Sonata ” is not a fast tempo music. It is a slow tempo…deep emotions. I let my mind wander for a split second in which I lost my concentration. My mind went as blank and white as the wall I faced.

I stop and turn to the audience. “I need to start over.” I get nice reassuring smiles. By now I cannot get my mind and thoughts to relax. I restart the piece, but struggle in mid-way…again my mind goes blank. I feel a flush flow to my face turning my cheeks red and stinging tears about to drop from my eyes. To avoid crying on stage, I simply get up from the bench, take a slight bow, and return to my seat. My dad whispers, “Don’t cry. They are going to take group pictures,” and gently puts his arm around my shoulders. Too late. Tears abound. No one mentioned my performance. People understood. But I held it against myself: I didn’t finish.

There are days when I ask God how I am to finish the task set before me, when I feel as if my physical body simply is just staring into a blank white wall. Circumstances seem too difficult, uncertainties leave room for doubts and questions of my abilities. I still struggle with wanting to be doing bigger things, but was reminded graciously that if I am faithful in the small, God will reward with more when I am ready. Olympians are not made overnight. They train in the small daily tasks for years…with the reward of a bigger performance than they ever imagined.

The most important thing in the Olympic Games is not winning but taking part; the essential thing in life is not conquering but fighting well.

~Pierre Coubertin, founder of the International Olympic Committee; “Father of modern Olympic Games.”

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Filed under Family Times, Funny Stories, Uncategorized

Like Plain English

I have never been a Shakespeare fanatic. Mostly because I never understood the language of his plays. In high school, I read and watched a few plays (movies) in English class and did the homework discussion questions but always seemed to grasp the scenes differently than others in the class.

“So what is going on in this scene here?” Or, “What does this character mean when he says this?” I would sit and hope that I would not be chosen. I didn’t want anyone to think that I was not understanding.

Don’t get me wrong, I didn’t have this problem all the time–only when discussing Shakespeare or poetry (like his Sonnets.) I love books, English class, creative writing and diagramming sentences. However, if I made a list of my favorite classic authors of all time, Shakespeare would not be in the top five. But I have discovered something that is helping me appreciate the works of Shakespeare. It is called, “plain English language.”

Barnes and Nobles could just very well be what I consider a great hangout place. It is almost like a huge library where you have freedom to chat and walk around with your coffee. I often go in to the local store just to look around at the bargain books, read a few children books and see what is newly released. In this meandering a few months ago, I headed towards the playwright section. Mom and I had watched James Stewart’s old film, Harvey, and I knew it was based on the play of the same name by Mary Chase. I wanted to see if there was a copy of the original play. There wasn’t, but I found the play Our Town, by Thorton Wilder, and skimmed through the text remembering seeing the play in the Creede Repertory Theatre and crying during the final scene. Excellent play.

What fascinated me the most in this section was the amount of Shakespeare plays available. I think all (even his Sonnets) were on the shelf. I didn’t bother to skim through them, but picked up this instead:

9781411401006_p0_v1_s260x420 www.bn.com

It is genius! This morning I sat at Beans-n-Cream sipping my Pumpkin & Spice coffee and found that I was not only enjoying the play, but understanding the play. Shakespeare is on the left page–plain English translation is on the right page. Maybe this is considered a “cheat sheet,” but in my opinion…if it allows me to understand the text of someone who is considered to be one of the greatest writers in the English language, then it is worth the modern translation.

My everyday conversations can parallel much to that of a Shakespeare play. As much as I do my best to lip read, words and phrases constantly get mixed up; I miss context or transition clues to next conversation; and I sometimes just say, “I have idea what you’re talking about.” Lately, if it really important– after attempting fingerspelling, but obvious that I still am missing one or two words–my parents will write it down. Like plain English and I understand.

When it comes to translation in communication, I think I use a lot of different methods: sign language interpreters, text messages, closed captions on television or movies, and a Captel service when talking on the telephone. After my hearing dropped and I returned the Phonak Cros, I decided a better investment would be a Cap Tel landline phone. Up until this point, I have been using an internet caption service through Sprint. It was free and accessibly convenient in college. But it is getting more inconvenient: To make a phone call, I would have to start my computer, get on the site, log in, put my number in and then the person’s number who is receiving the call, press enter, wait for Sprint Cap Tel to call me, press send and finally be set up for the conversation.

It is not like a TTY or landline phone where captions are fast, accurate and promising not to cut out of a conversation. (Believe me, many times during chats with credit card companies gets frustrating as you never get the same representative.) I will say that I found humor though…because the captions are based on voice recognition, there were many laughable “read between the line” moments. I can relate–happens to me in real life daily.

But these woes are no longer my concern. I am now the owner of a Cap Tel captioned phone!!!

MI_6356www.adcohearing.com

It works fantastic and I finally understand the whole phone conversation! It provides accuracy and convenience (especially safety for emergency phone calls). On the bottom of the screen there are little boxes…the left is mine and the right is the person I am calling. When talking, the box flashes, so I know when to listen and when they are done speaking. My box flashes too, and st often in red, which means I am talking too loud. Ironic, since most of the time people say I talk too quiet. This phone allows me to receive calls, make my own appointments, and best of all-talk to my grandparents (as well as other family and friends.) Out of all the new accommodations made recently and still to come–this is placed in the top five favorites, perhaps even as number one.

Most people do not listen with the intent to understand; they listen with the intent to reply. ~Stephen R. Covey

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Hearing All into One Ear

You have most likely heard the expression, “In one ear, out the other.” It may not be official living proof, but soon I will get to say that literally speaking (not figurative)…with a more emphasis, “In one ear, transfer to another.” 🙂

Last Friday I went to get my right hearing aid adjusted. Because it is now my only ear I hear from, I needed a bit higher frequency for normal routine living. We did not go overboard on volume, but enough to where I hear voices better, including my own. The minute I started talking in a normal tone of voice was when we knew the volume was just right.

There was also exciting news! Instead of a cochlear implant on the left side, I am now anticipating the arrival of my new Phonak Cros. Phonak is the brand name of my hearing aids as well as other products such as the Cros. The Phonak Cros is a device that looks similar to a hearing aid, but smaller and has a completely different function. cros_bte_single

hearingadvisor.co.uk

This is the Phonak Cros. However, I opted for a light mocha brown instead of blue. It is relatively smaller in size than my hearing aid. There won’t be any need for an ear mold as what you see here goes in my ear. How does it work? Well, since I have no hearing on the left side, I miss cues–mostly dealing with people talking or someone approaching me. The Cros has nothing in part on my left hearing. I will still hear nothing out of this ear even though I wear the device. What happens is that the microphone picks up on the sound (like someone saying “Hello”) and will transfer the noise to my right hearing aid.

If this does not make sense, just know that my right ear will have double time work! It will take time to get accustomed to the direction in which the sound comes; however, I am excited! I am excited to see how it works at the dinner table, in my shopping trips, listening to music in my car, Muffy meowing…it will be interesting!

When you depend on technology for physical needs, it can get frustrating. It is never a surprise to me anymore when in the middle of an important conversation, my hearing aid battery just dies leaving me to transition to full lip-reading. But for all the times of tears, hearing aid appointments, and cost of batteries (I might add), there are blessings. Not only will this new arrangement (in time) help me maintain a bit of social grace, but also the Cros will be linked to my right hearing aid, as was my left hearing aid before, so where I can switch the settings and volume with my left hand as it is my stronger hand.

God is my stronger hand. As I learn to depend on Him daily, I see there is still so much to learn. “Call to me and I will answer you, and will tell you great and hidden things that you have not known,” Jeremiah 33:3. Like the Phonak Cros, God links together the my disabilities with His abilities and carries them all in His hand. It does not stop my life from tears, doctor appointments, and the cost of following God into the unknown but when I do, there are blessings.

I am still learning this dependency–

…It’s amazing
How I forget
Can’t live my life
For lack of it
But the Light of day
I’ve always known
It’s in my heart
I’m not alone

Speak to me
Tell me all the things I need to know
I want to hear You now
Can You speak to me
I’ve opened up Your Word to free me
I want to hear You now

Make Your wisdom clear
The words I hold so dear
Bring the light into my dark
I hide them inside my heart…

*Audio Adrenaline. “Speak to Me.” Lift. 2001.

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Filed under Adjusting to NF2, Muffy

Half the Results

It is that time again…after three months of no doctor appointments (give or take a few random ones), today was my annual MRI and hearing test day. I only have half the results as I will find out the results of my MRI next week when I see my team of doctors at Children’s in Cincinnati.

My results are from my hearing test. I had actually prepared myself (maybe prepared is too strong of a word)–hmmm. maybe I should say, “wrestled with my emotions” on this subject weeks ago. It first started when I was on the spring break vacation with my family. I felt isolation. There were the large family dinners with company. In those moments, I felt anger and frustration. There were the nights I laid in bed and talked to God and just asked Him how I was going to live with all this new change. I felt sadness. There were the moments my family signed to me and I understood; practicing a language brought laughter.

I didn’t really have any emotions today going into my hearing test. Well, ok, maybe one slight assertive emotion: I go in and sit in the chair and we start discussing how my hearing has been and changes I have noticed. In the conversation I bring up my well-reasoned and thought out explanation of why I choose not to do the test where they read the word but cover their mouth. I say, “I just make up words.” Not on purpose, but I have no idea what the word is. I just think: that sounded like it started with a “C” and then say a word that it could be. Think of words! My probability of guessing the right word is off the charts! Which is why I always get zero correct when lips are covered. Then we test where I can read lips. A much more enjoyable experience! Sadly though, my assertiveness does not compare to set procedures, so I had to take all the word tests. I am sure the audiologist does not hear cases like mine often, since I am so old compared to the other patients there, so I am thankful she took time to hear my argument. 🙂
My right ear has stayed the same since February which is good news! The tinnitus today was not that bad, so I am glad for that too as some days it is SO loud, I feel that affects my hearing. I have an appointment next Friday with the Hearing, Speech and Deafness Center to get my hearing aid on the right side adjusted to a higher volume of hearing compatibility, because I don’t hear anything out of my left. The audiologist said, “It is not deaf yet,” because I could hear the beeps at two different levels (which I was not expecting). I was shocked! When I asked, she said it was at the highest level…so if you had regular hearing, I wonder how loud it would be! Basically, in order to “hear” something out of my left ear, it would have to be a volume of epic proportion–and at that point I still have my right ear so how would I be able to distinguish left from right?
I have been going without my left aid most often as it is a waste of battery. I usually just wear it in order to change the settings for the right as my right hand is so numb that changing the settings with it gets frustrating. At the present moment this is what I will continue to do. We did discuss very briefly the fact that cochlear implants is still an option if I choose. I previously had discussed with several doctors and did my own thinking and praying, listing of pros and cons on the subject. Right now, I still don’t have a peace about it, but I also feel that it is time to relook at my list, research and pray again about the subject just to refresh my knowledge. It is one of those situations I often wish that there was an easy answer for–but if the answer was easy, where would my faith be?

Therefore the Lord waits to be gracious to you, and therefore he exalts himself to show mercy to you. For the Lord is a God of justice; blessed are all those who wait for him. For a people shall dwell in Zion, in Jerusalem; you shall weep no more. He will surely be gracious to you at the sound of your cry. As soon as he hears it, he answers you. And though the Lord give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher. And your ears shall hear a word behind you, saying, “This is the way, walk in it,” when you turn to the right or when you turn to the left. ~Isaiah 30:18-21 ESV

That is all I have today…more to come.

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Filed under Adjusting to NF2, Family Times, Hospital Trips

Life’s a Road Trip

Road trips. I love road trips. Usually I am the backseat driver, unless I am needed up front to drive (which is not very often) or to sit as co-pilot and make meaningful conversations to keep the driver alert. Because I had my nose in a good book last week, I opted to take the backseat. We left Thursday and spent the night a few hours down the road so by Friday we only had half the time left to get to NY.

We get to the hotel and I am laying out my things for the next day and start getting ready for bed. I take out my hearing aids and place them in their safety container; then I put my container in my purse so I do not forget them in the morning. (Can you imagine!?) Friday morning we grab drive-thru for breakfast and officially set off on our way only 9 minutes behind the schedule we had hoped for the day before (I was so proud!) Now, you have to understand…freeways, airplanes and the constant murmur in the background at the grocery store gets very annoying to hear. I usually have my hearing aids on the second setting on road trips when there is another person in the backseat with me so I can keep in conversation and I keep them at this setting when I am shopping. I just take them out in airplanes. Because it was just me in the back and I wanted to read, I left my hearing aids in their container.

We get about 40 minutes from my grandparent’s place (destination) and I am on the last page of my book. You also have to understand…I normally shy away from a few genres in literature: Sci-fi, romance novels and animal (pet) memoirs. But my latest trip to the public library had a shelf of books about animals and gardens–in theme with springtime, April and Earth Day. A few caught my eye, with this one in particular, because the owl on the front was so fuzzy and cute I just had to read it. It turned out to be a very educational read, but it was entertaining all at the same time. After two hundred and some odd pages, I am absorbed in the life of this biologist and her owl that I get to the last page and feel it coming! Yeah, the tears. Inevitable!

If you are like me and don’t normally read animal memoirs or watch the nature show, then hope you can sympathise with me on this for this very reason: tears. Not that crying is a bad thing–I think it shows how great the book is, because the author was able to relate that emotion to the reader. But when I read books that I know will make me cry, I usually like to be in my room. Alone. Yet here I am on a NY freeway trying to control my emotions that I really was not expecting until I started the last chapter. I finish the book and decide if I distract my thoughts from what I just finished reading then I would be fine. I mumble up to the front that I am getting a Charlie Horse cramp in my left leg and I need a rest stop. Up until this point I have somehow managed to keep the tears at least in my eyes, but as soon as my mom turns around to see what I need, one look and I burst out the ending of the story in one grand sentence and then sob profusely.

Mom and I finish our tiny chat about the book and I dry my tears. I figure it is time to put in my hearing aids. I first put in the right hearing aid but don’t hear the “ring tone” that announces to my ear that it is turning on. I put in the left (which is no longer my dominating ear but practically deaf ear) and can’t hear much of anything. I take them out and replace the batteries. Nothing. I know my left aid is working but I pass up my right aid to my mom to see if she can hear the ring. Nothing. Now I am no longer sad but a bit frustrated. What am I going to do? I just had to put them back in my case and back in my purse. “I will just have to lip-read today.” Sometimes my hearing aids just need a break and then the next day work again, and because I have had to turn them up to the highest setting most often as of late, I figure if I just try tomorrow then maybe they will work. The timing in this is not great. First, a whole weekend with my grandparents. How horrible would it be not to hear? And second, I just finished this book about barn owls and other birds who have such precise hearing that they can even hear spiders crawling up the wall. Surely adds to my frustration.

You may have guessed by now–but if not I will tell you: my hearing aid is currently still not working. I avoid the term broken, because it could be a numerous amount of factors that does not necessarily mean the hearing aid is broken but just needs a few adjustments, like new sensor pads or sometimes my ear wax will get inside the aid and cause it to not work. I am hoping it is not broken. But I did survive the weekend! Actually, I think I did quite well. I think right now I just want to have a pride moment and pat myself on the back. But I also give a lot of praise to my parents and even my grandpa who took time to sign little words (even make them up just on the spot so I would get the word at the moment) and lots of finger spelling. 🙂 Most of one dinner conversation consisted of the game “Guess the Word in ASL.” That was fun. And we toured a lighthouse on Saturday, so we looked up how to sign the word. All I knew was boat.

We finish the fabulous weekend and life goes on. I did not do anything different today than if I was wearing hearing aids. I had a meeting in the morning to discuss job potentials. The lady knew ASL, so there was no interpreter, but I think I talked and lip-read more than I signed. I notice without my hearing aids in, I am more verbal to say, “I am Deaf” and let people know why I am not understanding one word or accidentally interrupting a conversation or starting one way off subject. Deafness has blocked my hearing senses, but I noted to myself this weekend that my eyes are going to have to take more responsibility: more observation of my surroundings especially in social settings.

I did not think my life would ever come to this time…this moment when I had to face the reality of my deafness. But in a way, this weekend helped me more than it did frustrate me. I learned in part from my grandpa. He is a godly role model. His actions, faithfulness and servanthood shine louder than his words. He lives out the famous Mark Twain quote: “Kindness is a language which the deaf can hear and the blind can see.” He cares for my grandma everyday…even all hope seems lost. He is like Samwise Gamgee:

Frodo: I can’t do this, Sam.
Sam: I know. It’s all wrong. By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going. Because they were holding on to something.
Frodo: What are we holding onto, Sam?
Sam: That there’s some good in this world, Mr. Frodo… and it’s worth fighting for.

~J.R.R. Tolkien, The Two Towers

We may not be fighting off Orcs or battling for Middle Earth, but I know even in Deafness that there is good in this world. My story does not end here. And when the new Day comes, it will be worth everything! I hold on to that hope: “[But] we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope.” Romans 5;3-4

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Conversations

We sat at an oval table. There were seven of us having a conversation. It was a typical conversation: We had some laughs, times of serious stories, questions, personal reflections. We interrupted each other and the best part was you did not have to feel guilty about not bowing your head or closing your eyes during prayer. No one else was either. All was silent.  And yet, I understood almost every word.

Isn’t that exciting? I sat for an hour listening with my eyes, talking with my hands–American Sign Language! I have not had an experience like this since I took a summer ASL class in college. The Deaf community of the town got together every so often for dinners at local restaurants and they had invited me to go as well. That was one amazing dinner and conversation!! 🙂 Here, our group is much smaller and diverse: There are the two interpreters; a couple–the man, mildly hearing-impaired and the wife, hearing; a Deaf man; an occasional college student who is studying ASL; and me–profoundly deaf, but can still hear a small percentage. But we all sit together on Sunday mornings for the same reason: to hear the sermon.

Our interpreters came up with the idea of our group meeting after the first service to have a time of fellowship. I think it is a brilliant idea! Soon after we started, I discovered that I am in dire need to practice, practice, practice my signing! The group assured me in full support–“This is the best place to practice.” How true. Watching people talk with sign language is different from actual signing. I know most signs and can sign well enough to carry a conversation. But I doubt my memory of the signs and I literally cannot fingerspell. I used to be fluent–signs would just float in the air as I tried to sign as fast as I talk. But the college days are over. I re-entered the hearing world–outside of my classes, chapels, Deaf friend and interpreter–becoming dependent on it, forgetting my signs. Yesterday was my motivation reminder: “For the things we have to learn before we can do them, we learn by doing them.” ~Aristotle

I lip-read, even when talking with a Deaf person or an interpreter. I can see the signs, but the focus is lip-reading. Like taking a picture–focusing on something in the background, yet you can still see what is in front. Same goes for how I communicate. So when they don’t use the mouth function..I see how much it impacts the way I receive the information. (Not as good.) For myself, I still “hear.” Therefore, I associate lip-reading with sound. I live with a hearing family…so when I open my mouth to speak–instinct tells me to use my voice. How else am I to be heard? As we carried on our conversation yesterday, I made a mental note to self…remember the elementary rule of effective sign language communication: facial expressions! This is the tone…there is no need for voice. Facial expression is the voice of the conversation!

Now all that remains is to retrieve the dusting ASL books off my bookshelf and to dive in–looking up words, signing things I see during the day, getting a better right-hand movement in my fingerspelling. And I know the main reason in my not striving for this earlier at home–because it is embarrassing. The sound of that sentence is just ludicrous! It should not be, but it just is. I should think of it in terms such as going around the house, shouting the words at the top of my lungs…why is that any different from just a little sign? I am not certain. Maybe it is because we have never really signed much as a family, besides a few basic words and they can fingerspell. Maybe it just seems inconvenient to me…why sign to them when they can hear? I am not certain. But my family is taking the steps to try different signs to me…why not then sign to them or practice myself?

My sister signed/sang to me the “Happy birthday song” this year before I blew out my candle on the cake. At that moment, I thought it was so beautiful that I almost cried.

bday song in sign language

So today I added another motivation reminder: I love my family and desire to communicate better with them. Thus, I will strive to practice routinely. We are all in this together…even though I am the only one nearing Deafness.

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Unorchestrated.

[Adj: Not orchestrated; unarranged or off the cuff]

I would venture to say that if I wrote this blog a few weeks ago then it would have had an entirely different perspective. I would have quoted to you lines from the Grinch: “Oh the noise, noise, noise, noise, noise. There’s one thing I hate, all the noise, noise, noise, noise!” Or my favorite Finding Nemo: “Mine. Mine. Mine. Mine.” The seagulls only ever quote one word the entire movie; must not have been difficult to learn their lines. Nigel, the pelican, is about to gulp down his breakfast. Annoyed at the seagulls, he turns and states in blunt authority: “Would you just shut up?”

When my hearing first started the extra editions of obnoxious noises and rhythmic patterns in my head, I had to force myself to find humor to keep myself from tears in most conversations. These two quotes above are most often what I thought. It was and is probably not very obvious to anyone (except to my family) that I am struggling to hear, most often past the extra noise. I put my emotions in the incognito, like the Penguins of Madagascar’s secret tunnel digging at the zoo: and I feel I hide the emotions well, until I can no longer conceal it.

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Communication. Hearing. Deafness. My thoughts seem to be consumed most often about these words, their meaning in my life and how to handle them. I first started hearing a high-pitched ring in my ears in the eighth grade. I grew to ignore it; it really did not distract me or play any significance to my communication even when wearing hearing aids. I don’t think I ever really thought much about the ringing, unless it was louder than usual–in event I had a headache or something. Fast forward ten years and things started to change soon after we returned from our spring break vacation. I noticed two different rings. They both had different pitches and instead of just a constant steady ring, they made patterns almost like a broken record. This is where my first annoyance started. And I thought of the Grinch. I thought of Nigel.

NF2 is a disease where you often feel complete isolation in dealing with the different side effects caused by the tumors; but what I should know or realize by now is that I am not alone. Maybe there are a few extremes, like my sweet-smelling aroma–which I still smell!!! But the ringing in the ears, also called tinnitus, is common among other people with NF2. However, before I knew this, I finally had the courage to ask my friend–who also has NF2–if she had ringing in her ears. In our discussion about the different noises we hear, we both described them in terms of musical instruments or notes–which I thought was fun. And then I realized it is yet another area in my journey with NF2 where suddenly I am no longer isolated…after all these years of thinking that I was the only one who heard excess noise in my head! Suddenly, my perspective started to diverge.

There is no “on” or “off” button; I will live with these noises my whole life. I walked in the kitchen last week and declared, “I am nearing Deafness; yet I will never sit in silence.” As many days as there are of complete frustration in trying to communicate, even just with my family, there are other days like today where I hear the noise but it is tolerable. Maybe it is because last night I sat out on the patio and waited for Muffy to finish his midnight snack. I thought to myself about all the noises and patterns in my head, simultaneously playing their rhythms. It sounds like a 5th grade band; it sounds unorchestrated.

Then I laughed at the thought: “I wonder if any of the famous composers ever felt this way?” Hearing all the noises of the orchestra in their heads while compiling their notes together to become one masterpiece. How did they do it? I thought of Beethoven. His deafness never stopped him from becoming a world-famous composer. I can’t destroy pianos like he did, but in waking up this morning, I realized that the piano is one sound and melody in my head that I hear. The tinnitus is changing; last week it was the sounds of trumpets, electric guitars, an accordion, and clarinets (which were most annoying–sounded like someone was just blowing air in the horn and wiggling their fingers back and forth between two notes.) This week, I still hear the clarinets (though not as loud) and the accordian…but today I hear a regular piano. It has been like listening to a “rest and relax” cd you find at stores even though it sounds more like a child just sitting down and playing random keys up and down the piano. But it is a piano. It is almost refreshing.

Who knows–maybe tomorrow it will not be so refreshing; maybe I will hear something new or maybe not. These past few weeks have taught me about embracing change once again. So today I concluded that even though this may not be the “music” I am accustomed to hearing, it is music and I can praise God for the noise–even the clarinets.

Praise Him with the blast of trumpets high into the heavens,
and praise Him with harps and lyres
and the rhythm of the tambourines skillfully played by those who love and fear the Eternal.
Praise Him with singing and dancing;
praise Him with flutes and strings of all kinds!

Praise Him with crashing cymbals,
loud clashing cymbals!
No one should be left out;
Let every man and every beast—
every creature that has the breath of the Lord—praise the Eternal!
Praise the Eternal!

Psalm 150:3-6 (The Voice Translation)

References:

Dr. Suess. How the Grinch Stole Christmas. Random House, 1957.

Finding Nemo. Disney Pixar. 2003.

*Image taken from http://www.religiousforums.com/forum/attachments/religious-debates/981d1171060978-great-news-hope-our-future-just-20smile-20and-20wave-20boys.jpg.

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Waiting for Spring.

Wrong will be right, when Aslan comes in sight,
At the sound of his roar, sorrows will be no more,
When he bares his teeth, winter meets its death,
And when he shakes his mane, we shall have spring again.*

I am sitting drinking a hot cup of plum tea, wearing a cozy sweater and my feet adorned with my slippers. The fireplace was just on and I think, “This is not spring-like weather.” Even today at lunch, snow frillies fell randomly from the sky and I said out loud, “Winter [has met] its death!!” Well, not quite. But slowly, it is changing.

This afternoon, I worked on sorting through my pictures from vacation. Some I have set out for cards and the rest I put in order and placed them in the photo album. The day we were at Grandfather Mountain, my mind thought of Narnia. It felt like winter…”Always winter but never Christmas.”* The hoarfrost on the trees, fog and gray skies just added to my imagination: This is what Narnia must have felt like.

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Winter in Narnia did not end overnight either. And while I am not waiting for magic to weaken, I do just have to be patient–spring will come.

Thinking these hopeful thoughts–I have good news!

I am finally able to wear my left hearing aid!!!! 🙂 For the first time in over a month! It still is not all the way back to normal, but I hear a little. The tunnel feeling is still there when I speak, but I turned the aid up to the highest setting–then put it into the second setting where the background noise is eliminated, and that helps. However, I do not think this is the best option–so I need to get in to have my hearing aid adjusted.

Since some of the fluid is out from behind the ear drum, now my ear is taking small steps back to where it was (I hope)! I have some fluid in my right ear as well, but so far have not noticed a change in hearing too much. The only thing is that I have extensive loud ringing noises all the time in my ears, and so I almost didn’t test the left ear yesterday. I had just changed my battery in the right hearing aid on Tuesday, and figured it would be a waste of a battery. But, I was wrong. I was instead filled with joy even at the smallest sounds.

Another praise is that I no longer have to go to the doctor’s office for weekly INRatio tests. INRatio is a small finger poke test that determines my blood count, due to being on the Warfarin blood thinners. I received my own home machine and kit on Friday and went through the training session. Monday’s test was an epic fail. The plan was to compare my home results with the doctor office results–I went and sat in the waiting room frustrated that morning. But not today! Because my blood count was high Monday, I had another test today. My INR was a success (thank you Mom for your help!) and my number matched the number at the doctor’s office. Now I am on my own!

While we were on spring break, I had a faxed order from my doctor for an INR test (just in case I needed one!) If I did, we would have had to find a medical facility to have the test done–which means registration, paperwork, waiting rooms–you get the point. Not something you want to do while on vacation! Having my own machine now will also eliminate this type of activity. The machine is not very big. I think my make-up bag is bigger, HAHA! So this is just one example I have thought of that makes having a personal INR machine a huge blessing!

On most days, spring may still seems a long way off. March seems to have come “in like a lion” but can’t decide whether it wants to leave “like a lamb.”

‘He’ll be coming and going,’ he had said. ‘One day you’ll see him and another you won’t. He doesn’t like being tied down–and of course he has other countries to attend to. It’s quite all right. He’ll often drop in. Only you mustn’t press him. He’s wild, you know. Not like a tame lion.’*

In whatever way winter leaves or spring comes, I am learning to find hope, joy and blessings in both the cold and warmer days.

*C.S. Lewis The Lion, The Witch, and The Wardrobe

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