Category Archives: Uncategorized

“It’s going to be one of those days,” I mumble, out-of-breath, to no one as getting myself dressed seemed more like a physical therapy exercise than anything else. The past week was filled with fun in preparation for my sister’s baby shower we hosted here on Sunday. Between the shopping, decorating, planning games and cute snacks–and all the relatives popping in and out at various times–I pushed my body to keep with the flow as best possible, all the while knowing things are still changing. I dismissed the left eye increase fuzz on terms of fatigue..and it probably could be part of it, but it is there and I just kept it in the back of my mind…I can still see, but sometimes wonder for how much longer.

Of course I shouldn’t think like this, but since I did and books have been on my mind anyway–in the aloneness of my room after saying goodnight to all, I would stand at my bookshelf and think. When God puts it on your heart to let go, you should let go. I have learned many deep lessons in this…some were excruciatingly difficult and others like my shoes and music came with ease. And now books. I still have a full shelf of books and use books with decorating my dresser top–so I did not give all, but found myself in the middle…like the process of transition from once being able to hold and enjoy leisure reading of paper, now to either reading it on my Nook (which I am thankful for), or take the paper and focus my eyes in good lighting, using the bifocals–one word at a time.

I have always been a good reader, so reading slow is probably the transition that bugs me most. Or some books I gave,because I could not hold them…my eyes are not the only thing that has changed, my hands as well. And today, as I tried reading a paper book in the morning sunlight, I found my match with frustration of slow blur, set the book down and got up from my chair. I gave up. It was one of those days where I had to be reminded that I can still enjoy things while I can. Even if it’s different from before, even if it means enjoying the slowness of time taken, even if it means letting go of my former self and embracing transition.

I sat down on the sofa; my walker filled with things to take back to my room. I wanted to open today’s mail in part of my “putting things back in place” process, as I had made an unorganized mess while writing letters all afternoon. I usually get trash mail or health related envelopes, but today, I received an envelope from my friend who founded Street Church and still runs the program to this day. After being part of the ministry myself for over five years, they are like family. The kids changed my life in more ways than I can express in words. I turn the envelope over and there was a small note–I had to use the magnified glass to read it, but it simply said that one of the girls, who was in my group all those years and now in high school, wanted me to have this:

I unfolded a sheet of yellow construction paper…colored marker speckles in the background, a simple heart drawn in the middle with one word inside–Hope.

I started crying and said, “Right now I don’t have much.” It has been one of those days. But through the faith of a child, I saw hope on a single sheet of construction paper, drawn and given in love.

Jesus said, “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven.”

Matthew 19:14

This is one of the hardest blog entries that I have ever sat down to type. It’s not the first time that I have wanted to share these heavy thoughts; this is something that has weighed on me for over a month now…it is something that will stay, because I live with it: terminal illness and the choices made in light of that life~

It was a typical day. Earlier that week, I had noticed my left eye starting what you view in swollen optic nerves–darkened, fuzz at the top of the eye. It came and went, but I knew that at my neuro ophthalmologist appointment the next day, there could be news I didn’t feel like facing the realty of–more vision loss or waiting for the glasses. In short, my eyes were concerning me. For some normal routine, I sat down to check my email. CNN is also one of my Home page tags, so I like to try as best possible to keep up with the news. On this particular day, one bold headline read: “Dying Young: Why Brittany Maynard’s Story Resonates.” Assuming it to be a story that could bring some inspiration to my day, I stated reading the article. I couldn’t even hardly finish it. I couldn’t even watch the news video in that sitting. Like a child learning lessons of reality, I felt I lost a sense of innocence. I felt everything in me just crumble, world turned upside-down and I literally thought I was going to be sick.

I got up from the table and my mind is a whirlwind. It didn’t help  that I was home alone at that time…even then, I am not sure that would have made a difference then anyway. I emailed my Dad at work and told him that I was struggling with this–and added the article link. I figured he had already read it. After sending it, my inbox popped in a new message from a dear friend, just checking in and replying some possible dates to get together. I responded and asked for prayer, because I truly just felt so lost. As if instant message texting, she said she would and that I should also talk it out with someone. That night, Dad and I briefly did–and I went to bed still distraught: how could choosing to end your life be one of dignity? All I saw was selfishness.

Brittany’s decision to end her life, “freeing” herself from physical suffering, by the Death with Dignity is the first that I had heard of this medical choice. Not that I live completely sheltered to these things, but it certainly is the complete opposite of what I discuss with my doctors. So my first few days after reading the article, I went back and forth in my own mind, body and emotions from thoughts of pride–“I have terminal illness too, rare with no cure, brain and spine tumors, a dying body with no treatment options, pain and frustrations…if I can, you can!” Then I would get sad, my soul just burdened for the loss of hope she had, as if she had none…and then I thought of others who would or have followed in those steps…then I thought of their families and loved ones and how it affects them; I thought of my family and the sacrifices they make and we never really talk about how they feel, because they are wanting to help and know how I feel. I struggled so bad with the concept of selfishness, because when you turn to dependent living, you struggle with the thoughts that your needs are too much and taking of other people’s time (plus just throw in my personality anyway) and there is not a day when I do not struggle with these thoughts. I am having to learn to  be my own voice and give a single answer, no more mingling in the middle and as I am learning this, I am dealing with all these other emotions that I never talked out, only but once to my old roommate over Skype a week before Brittany ended her life. I often wondered how much I could not see–the spiritual battle inside me.

On the day Brittany made her choice, I stood in the study room, grasping my walker handles for balance, because I wept. It was only in the following days that I talked in tears to my family and slowly began to release what I had in my heart for so long. How can one person’s choice make such a forceful impact? It wasn’t just me that was effected, this I am sure. It no longer penetrates, but it did stir in me the need to continue to share the hope I have found in physical suffering–

Everyday, the choices we make echo into eternity.

A choice is set before you now
Living or dying, blessing or cursing
You know, the time has come around
To turn from your fighting and rest in his mercy

Choose life, that you might live
The life that He gives, He gives you forever
Choose life, the way that it’s true
From the One who chose you, your Father in heaven
Choose life

Trust the Lord with all your heart
All of your soul and all of your being
Hold on, listen and obey
Surrender your life into His keeping

Choose life, that you might live
The life that He gives, He gives you forever
Choose life, the way that it’s true
From the One who chose you, your Father in heaven
Choose life

And the weight you’re under
Will be lifted away and the world will wonder
What happened here today?
Then you’ll stand right here and say

Choose life, that you might live
The life that He gives, He gives you forever
Choose life, the way that it’s true
From the One who chose you, your Father in heaven
Choose life

Big Tent Revival. “Choose Life.”

After a whole day of outing with my sisters and Mom, by the time we returned home, I was pure exhausted. The thing is–even for most of the day, I was being pushed in a wheelchair…so I am not sure if my exhaustion was from exercise or more the lack of it. Regardless, being out all day anymore–no matter what the agenda–will cause fatigue. My body is just slowing down, taking more time and energy to perform tasks and in all honesty, I think it is the notion of maintaining balance that drains (so the current state of my eyes also effects this.)

My Dad asked me last night,, in conversation pertaining to my disabilities, approximately how long it takes me to get ready in the morning. I said it depends–lots of factors to weigh in…if I plan to shower; what I did the day before that could make me more achy the next day (i.e. walking grass!); the weather, as rainy days make my joints feel more stiff; my stomach and intestines or just the plain difference of whether or not my hands want to easily work in getting dressed. But what Dad should have asked is how long it takes me to get ready for bed. One would assume it would be faster than getting ready in the morning..and maybe some nights that is the case….but most often, not.

Such was last night. By the time I got my covers rolled back enough to sit and slide in, readjusting and more puling of the comforter and blankets–which often seems like bench pressing–I am out within minutes. Such a deep sleep…I hardly moved. I think I woke up twice for the bathroom, but not certain, as I only remember one vividly due to what happened afterwards.

Climbing back in bed, I glanced at my alarm. 4:23 a.m. Out of the blue (or blackness of the room), I remember that I had not turned my alarm off from the day before…it was set for 7 a.m. and last I wanted was to feel vibrations and see light flashes three hours from when I am thinking this in utter fatigue. Not bothering to get in my covers, I simply roll to my left side on top of them all cozy and reach for the side of the alarm where I have to push with my thumb, the sliding button for turning the setting to an off position. No success from my thumb in the darkness, I am too tired and comfortable to sit up on my elbow and try, so I decide light may assist! Pushing the “lamp” button and thus momentarily blinding myself, I close my eyes–for “just a moment”–until the light adjusts even with closed eye lids. It’s like saying that you’ll hit only one more snooze in the morning. I am again, fast asleep.

Suddenly, I am falling! I am in a daze and I do not know where I am but I am falling. I cannot see, but it is dark and light together and my arms are trying to find something to hold, to brace my fall…and I am panicking and giving my “Mel scream” as loud as I can and finally it stops. My right hand grasping something, my breathing is out of control and as my eyes adjust–I realize that I am still in bed. What typically is funny, was a horrible experience…I had rolled off my pile of covers and was now lying on my back. My right hand was clutching the arm of my black chair that sits by my bed. I looked at the time, 4:57 a.m.

What baffled me most was the fact that no one came…no one rushed in the door to see if I was hurt or ask what happened and if I was alright. No one. I am still breathing hard and holding the black arm chair and realize that no one heard me. I am on the far end of the house from the other bedrooms and with my voice fading, why would anyone hear me? I didn’t actually fall and set off my Lifeline. And the night I did fall, when the Lifeline was not online call, Mom was only seconds from my room, because God had awoken her with the thoughts to check on me. Falling–even though I haven’t since that night in September–is still a fear.

It wasn’t just the falling thoughts that made tears swell. It was because I felt alone, and lately, as much as I am surrounded by a loving family, I feel alone. I feel like an outsider, distant, an observer–even though this is my home. I am just so different, live so different, have to think so different, “hear” so different…it gets lonely. Last night, after I realized no one heard me, I heard something different: “I’m here.” It wasn’t speaking, but I knew it was God…because in that moment, my breathing calmed and I let go of the arm of the chair. I must have turned off the light and got back in my covers, because the next time I woke, I was still lying on my back as if I never moved. But I remembered what had happened in the night, and turned over to see the time. 7:03 a.m. I slept for one more hour and then decided the morning was too beautiful to continue a natural snooze. I got out of bed, with a new way to begin the day–reminding myself I am never alone.

When I knew there was a pause in the dinner conversation last week, I had leaned over towards Dad and whispered with an “Oh my” expression, “I am getting bifocals!!” Dad responded with the same, “Oh my”expression, not that this came as a surprise…in fact when I got home from the eye doctor, I hastily returned to my unfinished email drafts and wrote my friend– “I knew it! BIFOCALS!” –as if they were something to be excited about, but in all honesty, I was excited. New glasses! All I had to do was wait, just a little longer, for their arrival.

I like surprises and I am very bad at keeping them. “Are they red?” Dad starts inquiring about the new frames. “I’m nt going to tell!” I reply, trying to sound most determined to actually not. “They’re retro…” is the only clue I give and make my hands in big circles around my eyes. And they are retro, for me, anyway. 🙂 Something new, different. Even I was surprised yesterday when Mom brings home my new sparkly case after her own appointment. “That was fast!”–I say excited and put the new frames on. I had Marcia close her eyes for the surprise new look, and as I am saying, “OH WOW!”, because I can see…Marcia is saying, “Can I open my eyes now?” 🙂 Dad’s surprise was the best; this time, his “Oh my” expression was more truthful. Muffy had just emerged from a nap on my bed and was waltzing under the dining room table, wanting to be pet. I couldn’t fully reach him sitting up, so I leaned my head under the table to assist in coaxing him nearer to my chair. It didn’t work, so I sat back normal right as Dad was putting his work bag on the table. “Hi, Dad! I told you they were retro.”

Like anything else in my body, the tumors control the functioning aspects of the brain and nerves. But I always find it fascinating that the brain can be “retrained.” This is why PT is so gruesome for me, because the brain is once again being forced to send the cut-off messages to the muscles from the hindered and blockaded nerves. And while there is no PT for my eyes–and the glasses don’t solve the shadow, loss of vision or lighting problems–being able to see gave my brain a full work-out…and I had to periodically take my glasses off as to not give myself a headache.

“It will take time,” Mom reassures me. Indeed it will, considering how long it has been and how much change there has been. Even recognizing myself in the mirror will take time, but it will come in time, day by day.

I appeal to you therefore, brothers, by the mercies of God, to present your bodies as a living sacrifice, holy and acceptable to God, which is your spiritual worship. Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.

Romans 12:1-2

Hello, November.

You came to our doorsteps in the chill of the night, and as I crawled out of bed, the beginning of another year’s month-long visitation was obvious and present. But unlike other company, we didn’t prepare for you…you bring your own forms of wonder to us and host us in your own time and beauty.

I must admit that I didn’t feel ready for you to come, mostly because the past two months have been so full of changes already that I didn’t want more. But there is upcoming excitement and anticipation in your stay–so please don’t move on too quickly.

But I want to ask: Are you ever disappointed at the end of your stay? After reminding us to be thankful–to count our blessings, to cherish our family and friendships–only to be overlooked a few hours later, as if you never existed? How can we forget so soon, so freely, so easily?

And so even today, as cold winds blow in grey skies, I am reminded to say prayers of thankfulness in all things.

Let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful.

Colossians 3:15

For the Sunday before I returned to CCU for my sophomore year, I was asked if I would sign Casting Crown’s “Praise You In This Storm” as part of the morning worship leading to the sermon.  I said I would pray about it, because at that point in my spiritual life, me and God were not on speaking terms…I was almost angry at Him because I was not being given any answers about my physical pains and wanted them! I was being a selfish teenager all over again. So when they asked me to sign the song, I was at odds; I felt fake and even though I was still not keen on the aspect that people would be seeing me sign but not seeing what my heart was holding in brokenness, I agreed. What I experienced was life changing: raw worship. God patiently waited for me to meet Him all summer, and standing by the pulpit as the music played–my arms moved to the words, but I was not there in thought. I was staring at the back wall, sobbing and told God that this is what I wanted, to praise Him in the storms.

That Sunday was a defining moment in my faith, pertaining to my physical thoughts. Thinking back,my life has been filled with raw worship–raw: leaving me vulnerable, humbled, changed through both the joys and tears. I am still learning and this weekend was no different than any other, besides what God revealed to me in one word (well two, sort of linked together), songs and a verse from Psalm 57 written on an index card, adorned with a sticker of two white swans on the water.

Be gracious to me, O God, be gracious to me,

For my soul takes refuge in Thee.

And in the shadow of Thy wings, I will take refuge,

Until destruction passes by.” ~Psalm 57:1

A few days after my signing experience, we were given some answers from Children’s Hospital as they examined my MRI again. I headed to Denver for the fall semester and had one of the best of college years! The day my family dropped me off and helped me unload my masses of stuff on the second floor room, my Mom handed me a thick envelope and told me not to open it until they had left. I didn’t wait long after I waved them a farewell from my window (which faced the parking lot) and inside the envelope, I found a long letter and the biggest stack of small index cards each with stickers and verses, all hand written. Mom might not have known at the time how much these cards would be my daily small reminders of the truths and promises I can cling to in any circumstance.

I have to admit, I am getting tired of talking about my vision and I am sure you are ready to hear something new. But until after my eye appointment on Tuesday (finally), I think God is preparing me for the next step, that I do not know what it will be…but as I see, the “waiting to see if the optic nerve will decrease in swelling” period is over. Because the longer I wait, the more my eyes go in a direction that is seeming to show that there is still obvious swelling; it just may be this way and while my vision remains, I want to see more clearly (hence glasses). Although even with glasses, my vision will be off, because the light and dark has changed. I have said it before that it is like looking through a grey veil; but after a  Skype conversation with my cousin, I found a better word: shadow.

“I can still see,” I say as I demonstrate on the video chat holding down my left eye. “But what I see is in the light, everything else is like in shadows.” I read Mom’s index card the next day. It started to make sense…the image of the swans’ wings, just thinking of being protected under big wings…but then I thought of God and in Him there is no darkness, so even though I am under His shadow, I am in Light. I was in the midst of finishing Martin Smith’s autobiography, Delirious: My Journey with the Band, a Growing Family, and an Army of History Makers, so the worship songs were fresh in mind as I was reading how sings were penned in different circumstances, lessons or God moments. One stood out among the rest–“Did You eel the Mountains Tremble?” and in the second verse, it sings,

Do you feel the darkness tremble?
When all the saints join in one song
And all the streams flow as one river
To wash away our brokeness

*Words by Martin Smith

Like I said, I don’t know what God is teaching me in this, but I just feel it is preparing me for something, whether Tuesday or elsewhere down the road…and because I’ve chosen to dwell in refuge under the Shadow of God’s Wings, the Darkness trembles.

This morning as I made my bed, I got to rhyming in my head

It’s rare for me to think this way, but somehow this morning started in a different way.

The sun was shining on the leaves, as they fluttered aimlessly in the breeze

I thought about the day before, when every aspect in physical body seemed like a chore.

Evening is when company came, and the routine was much the same

Sit in the middle recliner chair, head twisting left and right in the air…

Trying to follow along with no success, it didn’t help my mental helplessness.

After a cup of evening tea, I excused myself to be with just me

And stay awake, dismissing all thoughts of what’s physically at stake.

With nose in book, compliments of my Nook.

Tired eyes finally shut for the night, like the outside darkened skies.

So what changed in my slumbering, that made this day more worth remembering?

It certainly was not any easier, and that should be no brain teaser

I was still clumsy and in times a bit grumpy, yet was loved all the same…

The action verb for this word, kindness is its name

I do not have to earn or give in return, but as tomorrow comes

I’ll remember the night, the sun and leaves in the breeze, the kindness shown in Love…

See above my low and helpless state, fully appreciate

The day, the moment, my grey and veiled eyes flutter open…

Try singing instead of grumbling,

Because the Greatest Kindness, my Jesus has shown, and His grace and mercy my heart has made its own.

A reason for living, in kindness, in giving.

Disappointed. I guess that is, or at least was, the best word to describe my neuro ophthalmologist appointment on Friday. Although things were not a complete shock, per say. I have been through enough vision changes over the year to notice differences–even the small ones. The past week before my appointment, I was having some blur in my left eye, not a cataract style…although I do have a time with dry eyes. This is the darkened blur at the top of the eye, as if you were looking upward. It was like this before surgery. It is not constant, yet, but it does affect my lip-reading at times. With my right eye still so grey vision, I think I depend on the left still more than I realize, which could be a factor–like stress–to the eye, but I had also restarted getting bad headaches on the left side of my head, once making my eye pound like a heartbeat, and I knew something was not the same.

At the appointment, the usual questions were asked and I always give a full update, in full detail. I probably talk too much. As I tried to read the letters on the mirror, reflecting from the opposite wall, my right eye got “E.” And “HB.” Since I couldn’t get past that on good guess, we switched to lines: horizontal, vertical and diagonal… all different widths, but I could distinguish them–minus the fact I would say “vertical” even though I knew it was horizontal. The assistant finally had me utilize sign and show in hand motions what direction I saw on the screen. How embarrassing! 🙂 My left eye read down to where there are four or five letters in the row. I have never been much farther than there anyway, so I was pleased (even though I squinted).

Because the past few appointments have focused heavily on my right eye, I wasn’t thinking much besides trying to keep my left eye open, as my doctor shined his bright light and special looking-glass in my eye for a longer time than the usual. Lip reading in green as my eyes adjusted, all I got was that he wanted me to wait another six weeks, if I could, before getting new glasses. I felt disappointed, like healing takes forever…and my body keeps changing regardless. My doctor desires the wait, because my left optic nerve is more swollen, yet my vision has improved; my right optic nerve has improved since surgery, but the vision has not. I don’t understand my eyes, but I see wisdom in my doctor’s advice to wait–there is always hope that there could more healing, with a balance of optic nerves and vision improvement.

And I know there could be other changes, with no improvement. I have no control of either. It is where faith and hope intertwine, even in pain and suffering. There are days of longing, for healing. Waiting for that day may seem like forever, yet, I have been given one life to live; Jesus came so that I could have life to the full (John 10:10).

In Christ Alone 

In Christ alone my hope is found
He is my light, my strength, my song
This Cornerstone, this solid ground
Firm through the fiercest drought and storm
What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand

In Christ alone, who took on flesh
Fullness of God in helpless babe
This gift of love and righteousness
Scorned by the ones He came to save
‘Til on that cross as Jesus died
The wrath of God was satisfied
For every sin on Him was laid
Here in the death of Christ I live

There in the ground His body lay
Light of the world by darkness slain
Then bursting forth in glorious Day
Up from the grave He rose again
And as He stands in victory
Sin’s curse has lost its grip on me
For I am His and He is mine
Bought with the precious blood of Christ

No guilt of life, no fear in death
This is the power of Christ in me
From life’s first cry to final breath
Jesus commands my destiny
No power of hell, no scheme of man
Can ever pluck me from His hand
‘til He returns or calls me home
Here in the power of Christ I’ll stand