Tag Archives: music

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.” ūüėČ

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!!!




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



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.”


Filed under Family Times, Funny Stories, Uncategorized

The end of my boy-band days

Since you are my friends, I will tell you a secret. After all, that is what friends do. I was in love. Yes, seventh grade and I knew I had¬†found love.¬†Every¬†generation¬†seems to have this love or at¬†least¬†the infatuation of the term: boy band. I don’t know much music history, but I am pretty sure this phenomena started before The¬†Beetles.

My era was the Millennium. Yes, that was even the title of the best Backstreet Boys album. (Actually, the only one I ever listened to of their recordings.) Among the many during that time, I focused my obsession on the Christian pop boy band, Plus One. I saved up my allowance and bought their album The Promise on cassette tape. (Yes, cassette tape!!!) I memorized their songs, read the magazine articles, followed their Myspace, and daydreamed endless hours of meeting them in person. I never went to a concert.

Needless to say, by the time¬†I reached high school, I had a little more self-control on my emotions. But I still listened their Christmas album for weeks after my surgery. Jason Perry could¬†sing those high notes on “Oh Holy Night” so perfectly that I had no choice but to¬†hit the back¬†button and listen to it again.

Like all¬†boy bands, there comes a day when they are no more. Your favorite¬†decides to¬†part their ways and seek¬†other directions, much to the tears of the fans. I kept my copies of the cd’s but only listened to them here and there when cleaning my room or doing a workout. I never touched the cd’s in college. I hid my secret; only my RA and roommate knew as the song “Written on my Heart” came on over K-Love on our way to church. Now I am in the final stage: my cd’s are in the thrift store pile. I said goodbye to those cute little faces I had once been in love with–and that is that. (Ok, secret: I kept the cassette tape, only because it is a cassette tape. It is like an antique of my childhood days.)

– – –

I am not just saying goodbye to my boy band days. It has come to the point where listening to music is more frustrating (if I can even hear it) than it is enjoyable. But unlike the boy band tears, I am surprisingly unemotional about this predicament. Even more surprising that I found¬†pure¬†joy in deciding who would receive the last of my¬†cd’s…to whom I bequeath the¬†classics and oldies.¬†(Secret: I kept one cd–Nancy Honeytree. She was the first of music I remember listening to as¬†a child. I went to¬†a concert and sang her songs in church. It is now added to my “Special Box” with the cassette tape.)

Sure, there¬†are things¬†about music that¬†I miss being able to follow–like watching¬†movies¬†and hearing the soundtrack; jamming to the “oldies” in my car (but on long road trips, I substitute for a book in its place, read from the backseat and do just fine); or my favorite of falling asleep to the sounds of music. Honest thoughts here: this¬†may all sound sad, terrible, or unfair–yes, it is all those things–but that is not what I feel. I am satisfied. I was brought to this point slowly. I think the change first started when I painted the¬†simple bird for my¬†dad’s birthday three years ago. Music is not out of my life entirely–I may not be able to physically hear it with¬†my ears, but it is in me. It always has been. Always¬†will be.

Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything.



Filed under Adjusting to NF2, Books and Movies, Family Times, Funny Stories


[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.


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‚ÄĒ
every creature that has the breath of the Lord‚ÄĒpraise the Eternal!
Praise the Eternal!

Psalm 150:3-6 (The Voice Translation)


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.


Filed under Adjusting to NF2, Books and Movies, Family Times, Funny Stories, Muffy, Random, Uncategorized

2 Corinthians 5:7

On my birthday, my parents gave me Jeremy Camp’s book,¬†I Still Believe: Discovering hope and healing in the midst of life’s deepest valleys. Now, I have to warn you that I might be all over the place with the post as so many thoughts are in my head right at the moment. Hang in there and I will try to make sense of all this in what I have to say.

I had already started a book called,¬†The Lost Letters of Pergamum, which is extremely fascinating (more about that later I assure), and because I wanted to finish the book before I started any others, I just put the Jeremy Camp book under my Bible to save for later. A few days after when I got in bed, I just could not resist reading the first chapter…I can never read just one chapter if the book is compelling! A few chapters later, I found myself flooded over with memories from ten years ago.

In his book, Jeremy Camp tells his testimony and recaps the journey of his first wife’s battle with cancer in early 2000-2001 along with his healing process and how God led him on a journey to meet his wife now, Adie (former Benjamin Gate lead singer). Back up ten years when I first heard about Jeremy Camp, his first album,¬†Stay, had just been released September 24, 2002.

If you read my “What is NF2 page” you will note that this is before November when I first discovered the NF2 disease. Well, back up a few months to end of August 2002, CCM (Contemporary Christian Music) magazine had a two-page story about Jeremy Camp and his late wife’s testimony. I was so absorbed in the story, by the end, I was in tears. I knew I wanted to get his cd and hear the songs that he had talked about in the article.

October 2002, I finally got my braces off and on the way home, my Mom and I stopped by the Family Christian Book Store in Colorado Springs to get a few new cd’s–Stay was obviously one of them. As we enjoyed a few hours of music on the way home, I noticed I was drawn to Jeremy Camp’s album. It is rock and I liked that, but most important, I was drawn to the lyrics of 2 songs in particular: “Walk by Faith” and “I Still Believe.” Over the next month, I quickly memorized the lyrics to all the songs on the album not realizing how much that his songs were going to help me in my darkest hour. Then November 18th came. That night after we called grandparents and a few of my closest friends, I sat down just overwhelmed with emotions and confusion. I put on Jeremy Camp’s cd and for the next few weeks after that, it never left my cd player.

In April 2003, my oldest sister’s college invited me to their campus as they were hosting Jeremy Camp for an evening of worship. My sister had shared my story with many of her friends and they knew how much Jeremy Camp’s music had impacted my walk with the Lord during the hard physical and emotional battles. Because I had just finished my six weeks of radiation and was catching up on my school work, I was not able to attend. I was so bummed. I cried!!

God provided another concert in Denver, May 2003 at the West Bowles Community Church. [Just a funny side note–I pronounce things wrong a lot but some of the funniest were when I did not have my hearing aids. For example…West Bowles (Bowles pronounced as in a bowl used for eating…)–I pronounced it as West BowELS. Oh the laughs from my family could not be contained on that one! ūüôā ) Anyway, we headed up to Denver to pick up my sister from the airport and went to the concert. By this time, Jeremy Camp had just asked Adie to marry him, and she was there that evening. Reading the book now, I see the journey of healing for him and hope that God gave him in his relationship with Adie. Truly an encouraging and inspiring story that I was not aware of at the time of the concert. The line to talk with Jeremy Camp in person was endless, but it was a time I will never forget. I was able to share with him about how God used his music to encourage me when I first discovered the news of NF2. My family and I got to pray with him which was really special. The next morning was a Sunday, so we went to the morning worship service where Jeremy led worship and told more of his testimony. It was an incredible time!

I want to refocus on present day. It has been quite a while since I have heard of anything going on in Jeremy Camp’s life. I had just learned that he had a book coming out a few weeks before my birthday, and surprise, it was my birthday present. The thing is, I know it is God timed. Think about it (or as Star Wars would say, “Search your feelings, you know this to be true.” ūüôā ). I KNOW it is God timed. God timed Jeremy’s first cd to release a few days short of 2 months before the MRI results–the impact of the songs speaking truth about our walk with God is something that helped bring peace when all this started. Now, ten years later, Jeremy’s book releases exactly one month AFTER my blood clot. It was actually the week of February 19-25th that I hit a wall-not just physically and emotionally–but spiritually. I was angry and could not see any hope. To be honest, I am still struggling. I don’t have it all together yet…but that is why I am relating to this book, because we don’t have to have it all together–we just have to walk by faith. I am still not sure why God had this blood clot happen right when I was settled and doing so well…but I will never know here on earth and that is what Jeremy Camp’s book has reminded me–“Now faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1.

This book has really encouraged me and, most importantly, reminded me that God is with me every step of the way. He knows my hurt, my frustrations and my sorrows. Jesus said, “These things I have spoken to you, that in Me you may have peace. In the world you will¬†have tribulation; but be of good cheer, I have overcome the world,‚ÄĚ (John 16:33). If you have anyone that you know–or maybe even yourself– that is in need of encouragement, I really recommend this book. My story is my own story of how God has used Jeremy Camp’s testimony to encourage me not once, but twice, in my life. Maybe God will use it to encourage and bring hope to others as well. ūüôā¬†¬†God does amazing work in our time of greatest need…sometimes all we need is a little reminder and a point back towards the right direction. I leave you with my favorite song, “Walk by Faith” by Jeremy Camp.



Filed under Adjusting to NF2, Books and Movies