Tag Archives: faith

Seek (It’s always been there)

I think I made a discovery. If it’s not obvious yet, sometimes it takes me a while to piece together clues within the day-to-day activities before it just dawns on me what a surreal possibility could be indeed the happening (in accordance to the repetition clues acted or observed.) As far as my discovery, it is both action on my part first noted by a frustrated, accumulated observation with prior knowledge and experience.

Discovery–visual field tests do not lie. Let me re-emphasize that point: where your visual field test shows black on the report, you have a blind spot. You didn’t see the light flash, so you didn’t click the button, so it shows truthfulness in the results; It is no game boy stimulation. Last thing you want is to read is a “Game Over!” sign. Knowing that I just had a visual field test and even know (previously discussed) where my vision has worsened due to the optic nerve swelling, one could assume that I would note quickly why I was (or can) get increasingly frustrated while using my laptop or parent’s computer. Light sensitivity is now more minimal annoyance as I found a position at the dining room table that suits best…yet even now my right eye is re-adjusting and re-focusing. Some days are just better than others.

My discovery came after an evening of trying to write a letter in Word doc form with a few pictures added at the bottom for my grandparents. I wanted to tell them about the NF Walk and what we (me, Tasha, Chelsea) had done over the weekend. I love writing fun update letters like this to my grandparents! After me and Mom returned from the CO trip, I had done the same thing, but it was not like this past week’s experience. It proves the visual field test true.

The problem of my discovery: my mouse cursor point (in sight on-screen) will just disappear at certain areas of the screen. I had already, months ago, changed my arrow appearance to black and had enlarged it a little, so it should be easily seen. Last week especially, I would be using my computer and mouse–it would disappear. Frantic sometimes if I am in the middle of important work, otherwise, I usually let out my “Mel is frustrated, yet determined to finish!” grunts and continue to make motions with my mouse to see where the arrow causes pop-up action. It’s like playing hide-and-seek.

In my annual making the evening tea ritual, my brain starts to process what has been happening. Mom walks in the kitchen and I bluntly state my profound discovery: “My cursor and mouse arrow disappear in the lower middle section of the screen.” Yep, profound…because at that instant I continued my ramblings in orderly sense–perfectly clear sense: My swollen optic nerves worsened my visual field test blind spot in the right eye at this area, but I have also noticed that vision overlaps–so where it is a blind spot, it is also cataract hazy from the left eye. It is a mind-boggling scenario.

Having this blind spot reminds me of my walk with God. I don’t believe that God hides from me..His presence is always beside me. However, I think that sometimes God chooses not to reveal Himself as a strengthening of faith. When I lose my cursor or mouse arrow, although frustrated, I become more alert to finding even the smallest motion on-screen that signifies where my displaced subject awaits. When I lose sight of what God is doing in my life, I get panicky and frustrated. Seeking Him whole-heartedly, even the smallest motions of faith will indicate which direction I am to follow. And when God chooses to reveal Himself again, it is too wondrous to comprehend.

Amazing Grace, how sweet the sound,
That saved a wretch like me….
I once was lost, but now am found,
Was blind, but now, I see.

John Newton


Filed under Adjusting to NF2, Uncategorized

For when I will see clearly, again…

Not even a month had passed since I last saw the surgeon ophthalmologist regarding my cataracts. It was during that middle portion of May that the first correction surgery for the left eye was scheduled for July 1st. It seemed as such a long wait! And yet here we are..the surgery proceeding as planned–next week.

By now, it shouldn’t be a surprise (much) when I next mention that during the past month, my right eye has changed. Like any other change, it started slowly. The cataracts have already effected my vision as far as the blurry haze off-setting my balance and deepening the light sensitivity issue. I have struggled with light in darkness situations regarding the left eye (born with a lazy eye) since we moved here; I had made the decision to stop evening driving shortly after the move. My left eye just could not handle the passing car lights anymore. It was different in Denver: cities know no darkness.

If you recall, I have–at one point in time shortly too after the move–had swelling on the optic nerves, resulting in seeing black spots. As it progressed to larger dots, I saw the ophthalmologist–who presently still is my eye doctor–and he prescribed the medicine that causes carbonated drinks to taste metallic. Not complaining, because as of the past two years, the medicine has helped keep the optic nerves stable. (On a side note: unlike other individuals with NF2, I do not have tumors on my optic nerves.)

What then causes the optic nerves to swell? “Tumors,” would come a reply. Although it’s almost like a trick question, because there is no definite cause tumor in sight (at least for me, since I have no tumors on the optic nerves growing with obviousness alarm.) ¬†My body contains many, many, many tumors…we don’t even know how many to be exact. With many tumors growing at the same time, it is difficult to know which tumor causes what side effect. Even when tumors on the MRI scans show “no growth,” but I have increasing side effects (numbness, intestine problems, weakness in balance and strength), we still don’t exactly know what tumor is causing the problem.

When my right eye started changing about a month ago, different to that of the cataract haze, I didn’t think it to be an optic nerve problem. It started here and there, an intense darker fuzz in the eye when it caught a time of light sensitivity causing me to have to pause longer to re-adjust my eye. It only lasted a few seconds at first, but I still got to saying, “Hold on…eyes adjusting!”–so that way the person I was talking to understood that I was no longer lip-reading, but squint focusing back to normal sight.

After the trip to Colorado, the problem started increasing more times a day and I noticed that instead of seeing the typical cataract haze, I was now seeing a tad darker tint of everything. Trying to explain this situation, Mom suggests: “Like a veil?” Mom is so good with words. “Yes! Like a veil!” It still is the hardest situation to explain, but it is not very difficult to explain when you experience seeing in “tunnel vision.” And that is when Mom called the ophthalmologist office at the surgical CEI center where they set up an appointment last week in order to see what is going on with my eyes, based off my rambling adjective descriptions of side effects.

Without even dilating my eyes, the ophthalmologist on the emergency appointment floor noted that the optic nerve on the right eye is more swollen. I don’t understand how they “measure” the growth, but he mentioned that (after taking the density) it had gone from a “2” to around a “3 or 4.” All I know is that this means it grew. The doctor asked if I had any questions–which I didn’t–and as we left, the office there set an appointment for the following day with my main ophthalmologist. Bright and early the next morning, Mom and I headed back to Cincinnati.

I ended up taking another visual field test, even though I had just been in April for an appointment. The hardest part of the test is holding the clicker; I ended in holding it in my hands much like a tiny game boy remote, but grasping the cord with my right hand so I wouldn’t drop it. ūüôā Considering the eye condition, I was a bit shocked when the visual fields showed smaller-than-expected change. The outer and upper rims are areas where changes occurred in both eyes, but the inner middle to bottom portion of my right eye is where you see the most growth of blackness on the chart.

I did have a few questions for my doctor, and then we discussed the next steps. As of right now, he doubled my eye medicine dose per day. Change may occur slowly–so it is hoped that by my follow-up appointment on August 20th that there will have been positive changes and stable optic nerves. I do have one other option for helping release the pressure on the nerve, but it is a small surgery on the outer lining of the nerve; and even though the nerve is not touched, I am preferring no surgery.

This past month…especially past two weeks..has been a test of patience. I get frustrated with my eyes. “I can’t see!!!!” It is becoming my new “Good grief” slogan; but the truth is that I¬†can¬†see…just not how it used to be. And until the day when my sight returns to its former self, I just have to keep focusing on the Lord. I can’t deny that fearful thoughts of blindness has already crossed my mind, but focusing on them causes me to see life through tunnel vision. Eyes of faith oust the darkness and shines the light of hope in its place.

God, my God, I cry out:
Your beloved needs You now
God, be near; calm my fear
And take my doubt

Your kindness is what pulls me up
Your love is all that draws me in

I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You

I Will Lift My Eyes.” Bebo Norman. Between the Dreaming and the Coming True.¬†2006.

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Filed under Adjusting to NF2, Hospital Trips, Uncategorized

Seeing Ahead

Last week I saw the surgeon ophthalmologist for the cataracts in my eyes. After a whole day (literally) of sitting in the waiting area or the exam rooms, I left the hospital with extremely tired eyes. Cataracts plus dilated eye drops does not equal a good equation. ūüôā

I haven’t had an eye exam in close to two and a half years. When I see my regular ophthalmologist every four months, it is only a visual field test and a quick shining of bright lights in the eyes as he checks the optic nerves for signs of swelling. No dilating, no tests where they set lenses and click back and forth–in which you say whether “one” or “two” is the clearer option. Simple and fast.

That being said, this eye appointment was interesting. Not only were my eyes so dilated (you could hardly see the color of my eyes), but also the bright lights in the eyes were making lip-reading a colorful experience. Everywhere I looked seemed to be a mesh of sea-green and magenta. I also realized that taking the option “one” or “two” test, I needed assistance; if I was viewing the letters on the wall with Star Wars looking vision specs, how was I to know which number was with which lens? I solved the problem by explaining that Mom should stand next to me–when the nurse flipped the lens, she would say the number. Mom would then tap my hand either once or twice and I would say which option was best. It was like a signing interpretation in the dark!

When my optic nerves were swollen and I was seeing black spots in my vision, I started a medication to help keep the swelling stable. Even last spring when the MRI showed growth in 80% of the brain tumors, my vision was not affected and I am very thankful. Although, currently, I am not seeing black spots, seeing through a fogged lens is starting to annoy me. I am out of focus. A least at home I can squint; I was told not to squint when taking the “read the letters as far down as you can” test. Squint focusing was cheating. ūüôā

The past few days, has been difficult. It is testing my patience. I left the hospital with a surgery date: my left eye will be corrected July 1st. It seems so long…the thoughts, “Can’t it just be fixed right now?’ come to mind. Maybe more so, because of all my health problems, this is one that can be fixed…it’s temporary, anything else I experience is a permanent loss.

This morning, the story of Jesus healing a blind man came to mind (Mark 8:22-26.) When Jesus first laid his hands on the man’s eyes, the man could see–but it was not clear: “I see people, but they look like trees walking,” (24.) It was only after Jesus laid his hands on the man’s eyes for a second time that the man’s vision was fully healed. I wondered what the blind man may have been thinking after the first time Jesus laid his hands on his eyes, or even the disciples who were also present. It is not important, but the story does show a testing of faith.

The answers to our sufferings may not come rushing in all at once; in fact, it is rare if they do. What I see ahead may appear hazed and out of focus, but it is temporary–one day Faith will be Sight.

Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.

I Corinthians 13:12, NLT


Filed under Adjusting to NF2, Hospital Trips, Uncategorized

First Day of Autumn

My mom has a Colorado scenic calender¬†that hangs near the kitchen. This month’s picture is titled, “Little Snake¬†River¬†sunrise.”¬†The¬†sun shines on the dry¬†mountain peaks giving them a tan color for the horizon.¬†The trees shimmer with¬†orange and yellow.¬†The sky is blue. You can see the fleeting trace of dark clouds at the top of the picture which are being replaced by puffy white ones that lay low in the sky by the peaks. And there is a double rainbow.¬†I notice that I tend to stare more at pictures or paintings these days. I soak in the color schemes or theme. I try to visualize what the¬†artist had in mind. This picture was the same. Just one of those that makes you wonder if the photographer purposely waited until sunrise to take the picture or whether it was spontaneous. I go with the latter.

Like the picture above. It was taken¬†last Autumn, a day after one of my chemo treatments. My sister and two college friends were going to Yellow Springs to enjoy the air, colors and tourism. They really wanted me to go. So I went. I had a great time. This picture was spontaneous. Look at how perfect it is. Everything from color coordinating, our hand positions (that was not planned either) to my eyes peeking¬†out from the leaf. ūüôā I thought the other two were doing the same. I don’t think the picture would have turned out as great if we planned it. And I love to plan!¬†Ask my family…it drives them nuts. There is nothing wrong with planning ahead. Ask event coordinators. I am sure the word procrastination is never mentioned during their interviews. It is actually a job I could see myself thriving in, minus the telephone calls. Aside from profession,¬†when you plan ahead based on¬†circumstances, it is harder to embrace change. Trust me, it seems to be my life’s bad habit.

I wrote a post at the beginning of Spring about how my vision is blurry when I take my eyes off Jesus. Two seasons later I see parallelism to my future much like a leaf. A leaf grows in the Spring. It nourishes in the summer, and it dies in the Fall. Its beauty peaks a few days before it sees the ground. Have you ever watched a leaf fall from the tree to the ground? How is a leaf to know the timing of when it will be set free or the circumstances around it that will shape the direction of its fall?

Not that I am falling (well, ok, I do physically when I twist my ankle), but the circumstances around me seem to be¬†falling. At least in my leaf-like eyes. Circumstances such as my last day of work is in exactly two weeks with no prospects open for something new. Circumstances such as my next MRI is October 22nd. To be honest, thoughts cross my mind frequently of what those results will show and whether or not¬†I will have to restart another treatment. Circumstances such as finding an apartment, fixing my car, putting my paintings in coffee shops, or¬†where God needs me to serve in a ministry.¬†Circumstances–temporary things that shift like the wind. Circumstances that weigh heavy on the heart, much like the tug of gravity on a leaf. Circumstances that are out of my control or leave me¬†confused.

I cannot see what lies ahead, but I have to trust in God’s timing. It is perfect. It is not spontaneous¬†like human plans. It is tenderly planned to meet¬†all my needs. He sees the greater¬†picture. I see the spontaneous moments piece by¬†peace.¬†I must admit that as much as¬†I try to keep my eyes on Jesus, I am¬†more like Peter who looked down at the roaring waves beneath¬†his feet. Life is walking by faith. “Now faith is the substance of things hoped for, the evidence of things not seen,” Hebrews 11:1.

And faith is much like Autumn.¬†Change is here. Change is not always a strand of negative effects. Without the change of colors and falling leaves, how will Winter ever arrive? I must embrace change. I must embrace the Autumn in my life, for even when everything around me seems to be falling–it is beautiful. And so I wait. I wait for God’s timing, because if a leaf falls too soon it can be trampled. If it falls too late, it can wither. I wait for His release of beauty as I enter the Autumn winds.

Well, sometimes my life just don’t make sense at all

When the mountains look so big and my faith just seems so small

CHORUS: So hold me Jesus, ’cause I’m shaking like a leaf

You have been King of my glory

Won’t You be my Prince of Peace

And I wake up in the night and feel the dark

It’s so hot inside my soul, I swear there must be blisters on my heart


Surrender don’t come natural to me

I’d rather fight You for something I don’t really want

Than to take what You give that I need

And I’ve beat my head against so many walls

Now I’m falling down, I’m falling on my knees

And this Salvation Army band

Is playing this hymn

And Your grace rings out so deep

It makes my resistance seem so thin


Rich Mullins. “Hold Me Jesus.” A Liturgy, a Legacy, & a Ragamuffin Band. (1993).

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Filed under Adjusting to NF2, Family Times, Hospital Trips, Paintings, Random

The Start of Something.

It is here. The start of something. I go outside and I breath in. Fresh air! Crisp! The start of Autumn has begun. The trees are feeling it too. They are beginning to change color. Although it is not immediate, it is the start of something.

So in life, I see the same with prayer. The start of something. Prayer is an immediate message to God. But His answers are not always as fast. Patience, endurance, hope. The answers come in as a start of something. A start of something greater than ever imagined.

People pray for my healing. And now I am praying for a loved one’s healing. And even though it has only been a week for her compared to my ten years, I find myself already getting frustrated. Why can’t God just hear our prayers and heal her? Then¬†I think of all those who have prayed for me diligently for the past ten years. Some everyday. I wonder if they have ever asked the same question. But they continue to pray anyway…even¬†when they cannot see any results of healing.

The leaves will continue to change their color until the last has fallen.¬†How can a single leaf survive the harvest¬†winds? Patience, God’s timing is perfect. Endurance, God will never give us more than we can bear. Hope, God holds our future. And¬†I begin to feel it. The start of something. Peace–like fresh, crisp Autumn air to my soul. And I long for more.



Filed under 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