Category Archives: Books and Movies

Homemade OT

“Do you want to go out on the patio to sit?” We had just finished dinner and Dad was up from the table already starting to clear the dishes to the sink. It was a particularly toasty day, so I had only ventured outdoors when Mom drove me to my short doctor appointment in town. But around supper, the temperatures dropped slightly making the air pleasantly calm and a soft warmth.

“I’m not sure what I am going to do,” I reply to Mom’s question. Before dinner I had finished a book–downloaded on my Nook–that a friend recommended to me. I was all caught upon emails, not planning on starting any paintings, had a clean room and just did laundry a few days prior, and didn’t feel like resuming finger-poke blog entries just yet. In a word, I was a bit bored. I could have called someone on my Captel phone for a conversation, but decided fresh air was needed.

I was taking the last of my medicines in the kitchen and thought of what to do while outside. Mom was going to be planting the yellow Columbines she recently bought from Lowes and Dad was working on (what looked like to me) weeding and installing the new garden hose. Never being one with a “green thumb” and now too adding my limitations of walking, bending over due to balance and my hands–I am pretty much no use in the garden. (Although I do play a role sometimes of watering the flowers and small bushes near the house with the hose.)

I decided I could sit at the picnic table and continue where I had left off earlier in the morning, reading and recording the verses where the phrase, “steadfast love,” appears. I had started this quest last Fall, but stopped after finishing Psalm 119. The notebook of references fell to the bottom of my upper right dresser “junk drawer” and it wasn’t until yesterday that I found it.

Lost in thought about the Psalms, Mom comes back to the kitchen and starts talking to me about using rice as an Occupational therapy exercise. Taking into consideration how the numbness in my hands affect my feeling, holding or picking up objects (I demonstrated with my medicines,) Mom continues to explain this simple exercise in an excited fashion. Totally missing a few context pieces to the conversation puzzle, I just understand that if you put rice in a bowl with objects, such as beads or coins, use your hands to feel around for the objects (because you can’t peek in the bowl for them), then it helps–not only your hands and finger touch awareness–but strengthens the mind. It’s like a psychology OT exercise! Stimulating!!

Instead of sitting around the picnic table, Dad suggests sitting under the tree nearer to where they are working. It was lovely! As I am getting ready to pull out my Bible, Mom asks if I wanted to try the rice bowl activity. “Sure,” I say. Mom goes in and gets a bowl of rice and places in “hidden objects” for me to find with my hands. The objects slowly discovered: nice sized wooden beads and pennies. “How many pennies are there?” Mom turns her head so I can lip-read, “Twenty.” Twenty? I found two. 🙂

It amazed me how just weaving my hand in a bowl of rice “looking” with my fingers for objects, felt like an exercise. My hand was physically tired; I rotated between left and right. My physical therapist had commented on how much atrophy she saw in my hands, then showed me a strengthening exercise to help with the curling fingers. But it persists. The hardest part of nerve loss is that it can never be regained, though I can keep it for as long as possible if I retrain my brain using the muscle exercises. It might not amount too much, but it is better than being idle.

The book that I had finished before dinner is an autobiography titled, Life, In Spite of Me: Extraordinary Hope After a Fatal Choice, by Kristen Anderson. At age 17, Kristen had lost all hope to live and attempted suicide by laying on a train track one block from her home. But she did not die. God, in miraculous ways…unfathomable ways…spared her life–a second chance. Through the long, hard recovery, Kristen came to know the healing power of God’s forgiveness, mercy and grace. Although she didn’t understand God’s timing, she started to share her story. She had questioned what life would hold with no legs…her future…but the more she shared, the more outflow of how her testimony helped others who were hurting came to light. Feeling God’s call, Kristen started in full-time ministry and founded Reaching You Ministries.

There are moments in my life where I question my abilities, strengths and future. It is not an easy road…and unlike Kristen, my body will never recover here on earth. But the encouragement and hope I found in Kristen’s testimony gave me the reassuring peace that my abilities, strength and future are not like the shifting sands…but solid, unshaken…held in God’s hands.

My hope is built on nothing less
Than Jesus’ blood and righteousness.
I dare not trust the sweetest frame,
But wholly trust in Jesus’ Name.

Refrain

On Christ the solid Rock I stand,
All other ground is sinking sand;
All other ground isinking\

“The Solid Rock.” Edward Mote. 1836.

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Everything I Am Not

In season three of The Andy Griffith Show, there is an episode titled, “The Great Filling Station Robbery.” In the beginning of the show, we find Deputy Fife (as usual) trying to bring the Mayberry jail to more modern terms with technology, though it is not needed. As the episode progresses, the Filling Station has a theft problem. A troubled teen named Jimmy had just been given a job there to assist Gomer in the pile-up of cars needing to be fixed while the owner, Wally, is away. Because of his troubled past record, Jimmy is blamed for the robbery. Andy takes the calm road and waits for the next evening to see what happens; Barney, of course, sets a flawed attempt of greatness to catch the crime in action and jumps to conclusions. At the end, it is Jimmy’s knowledge in modern technology that catches the true criminal in action, proving that he was not what everyone thought he was to be.

Although Deputy Barney Fife didn’t do anything to solve the robbery, the ending minutes can make you giggle when Barney calls his gal, Juanita, at the diner. In typical Barney-ego seriousness, he recites a poem:

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Juanita, Juanita…lovely, dear Juanit

From your head down to your feet,

There’s nothing half so sweet–

As Juanita, Juanita…lovely, dear Juanit.

Oh, there are things of wonder of which men like to sing.

There are pretty sunsets and birds upon the wing.

But of all the joys of nature, none truly can compare

with Juanita, Juanita…she of beauty beyond compare.

Although I don’t recite poems comparing a sweetheart to the joys in nature, I have found myself lately in a state of comparison, usually in physical terms only. I can compare myself to others placing myself above them (judgmental) or placing myself below them (insecurity). Yesterday, I did both.

Being disabled, it is easy to find yourself in this position. I wonder if any other disabled individuals can also agree to this, but personally, I find myself comparing my physical and mental state towards other disabled individuals. There is always the persons that are far worse off than yourself; sympathetic thoughts towards that individual mingle with your own thoughts of gratitude…”I’m glad that’s not me.” And it is wrong.

On the other spectrum, there are those who you may consider not as bad as what you endure, so you place yourself above them in judgement. This is my downfall. In comparing myself to others in this way, it makes my own pains seem not as heavy. And it is not so much a condemning judgement, as it is maybe more self-pity; a “I can no longer do these things, but you can…” But even this thinking is wrong.

Comparing myself to anything other than what God holds true in my life can only be “half so sweet…” and I miss the purest blessings of reaching out to those around me.

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NF Walk 2014

Last summer, I had the opportunity to take part in the Children’s Tumor Foundation NF Walk. This fundraiser walk proceeds funding for continued awareness and research about the disease, as well as treatments for those individuals living with either NF1 or NF2. The Children’s Tumor Foundation selects cities across the states and holds this event all throughout the summer. Last summer, I got the information for the walk taking place in Cincinnati. It was more a spontaneous decision, but I was very humbled by all the support we quickly raised.

Participating in the walk was very special. At that point in time, I knew my options for treatments were getting slim, but never imagined the upcoming year that lay ahead of me. So while we were waiting for the walk to begin, we chatted with some other participants, who all had NF1. I was not surprised…I actually think that I was the only NF2 person there. Sitting down for a few minutes, Melissa came with the idea to write why we were taking part in the walk:

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When I learned that the NF Walk would again be in Cincinnati this coming June, I knew I would want to participate. Last year it took me an hour to walk the two-mile course…I used my walking sticks and towards the last stretch, depended on the arms of my sister and aunt. This year, my plan is to push a wheelchair–when I no longer have energy and need to rest, I will depend on someone else to help me to the finish point..walking the second mile.

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My Team name is”A Mile in Mel’s Shoes.” Through this blog, you have experienced the journey right alongside me–the sorrows and heartaches, questions and pondering thoughts, cheerfulness and laughter. Unlike the set course of the NF Walk, the next mile in my life is uncharted. It is a walk of faith. You have walked the first mile in my shoes–and I know you will be there, ready to continue walking another.

Linked below is the website for Team “A Mile in Mel’s Shoes.” If you are interested in joining me, my parents and two best friends since grade-school (coming for a weekend visit! 🙂 ), click on the “Join my team” button for registration. If you would like to give in donations, please select “Donate now.” You can also donate to a team member’s personal page (names are listed at the bottom of the Team page), where comments can also be written. All donations given on either goes towards the team goal.

Click here for link: Team A Mile in Mel’s Shoes 

If you would like to send a donation by check, please send it to the following address:

Children’s Tumor Foundation

120 Wall Street, 16th Floor

New York, NY 10005-3904

– – –

Thank you for walking with me. The journey continues, one step at a time.

 

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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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Pride and Humility

“Oh, the things you used to complain about,” I tell myself as I rummage through a stack of folded clothes on my closet shelf trying to find a pair of cozy sweatpants. It was getting later in the evening and if I hadn’t already thought the rest of my day had been a frustrating one, I did even more so at that moment. The unexpected sick intestines always forces one to extreme humility. Learning humility is not a glorious experience. Yesterday was just one of those days.

My parents just returned Monday evening from their special anniversary trip. During their absence, I had an abundance of help, but also had times when I was alone. I thought I did pretty good for myself, considering everything. I even boasted, “I’m so proud of myself,” and would continue to tell why this was so.

Growing up, we sisters liked to watch the Kevin Sullivan televised movies, Anne of Green Gables and Anne of Avonlea. I am surprised those VHS tapes lasted (better still that my parents still have them!) One of my favorite characters is Mrs. Rachel Lynde–always in the gossips and people’s business, or as Marilla Cuthbert would say, “meddling in other’s affairs.” This would draw a sharp gasp from Mrs. Lynde as if she were offended by such an accusation, though it never took her long to get right back to her normal self– “You know I pride myself in speaking my mind.” In her eyes she was never at total fault for her disputes with Anne and offered sound guidance to any ear listening, which usually was Marilla. “You know what they say Marilla: ‘Pride goes before the fall;'” Anne had just left for Diana’s pre-wedding b0nfire party, thus leaving the two old friends in the kitchen. Marilla is at the stove retrieving the water kettle, back turned to Mrs. Lynde, she semi-rolls her eyes before turning around and patiently replies to her friend. An act of humbleness.

I don’t think yesterday was an example of a “Pride goes before the fall” moment, rather, I believe God used it to show me Jesus. You see, as I was fumbling around trying to change clothes and make myself cozy, Mom was on her hands and knees cleaning up in my bathroom, because I physically can’t myself; even my “help” at the end didn’t account too much. When crisis happens, I am not abandoned, but surrounded with helping hands. Yesterday, though not a glorious day, was my humble reminder.

But Jesus, even after showing His Love to His disciple’s by getting down on His hands and knees to wash their feet, was abandoned by all in His greatest time of need. Mocked, beaten, betrayed and death–it was then that his disciples, in confusion, thought they had been abandoned. Shocked and morning His death, they didn’t understand..not until later when the Truth appeared to them–Jesus was alive! The Easter story is not about abandonment but salvation–surrounded by Christ’s Love and held in the nail-scarred hands.

But may it never be that I would boast, except in the cross of our Lord Jesus Christ, through which the world has been crucified to me, and I to the world. 

Galatians 6:14, NASB

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April Reads

I have decided for the month of April, I am going to engulf a portion of literary hours in Children and teenager titles. I had so many on both the “Unread” and “Reread” lists that it took me a while to eliminate to the bare minimum. None-the-less, I am pretty excited!!! 🙂

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Unread choices:

  • Mr. Popper’s Penguins by Richard Atwater
  • The Fault in Our Stars by John Green
  • The Cricket in Times Square by George Selden

Reread:

  • The Voyage of the Dawn Treader by C.S. Lewis

What about you? What are your favorite Children or teen books? Have any recommendations? 🙂

PS. March reread was Safely Home by Randy Alcorn. I truly recommend it–Hebrews 13:3

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Climbing Mountaintops

Much of our dessert and decaf discussion tonight was about Colorado. Mom even pulled out a photo album and as more talk was being said, I sat side-gazing at the pictures as Marcia flipped through the pages. I felt flooded with emotion…suddenly I wanted to be there, a longing to be home.

C.S. Lewis once said, “If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world.” When I struggled in the late Fall 2013 with inner emotions about what God had in store for me, I had lost sight of His divine picture being painted especially for me. As the canvas continued to emerge with the colors of life, I started to live in hope rather than despair. But I still have a longing–a heavenly one.

Seasons change. Some view valleys as the struggles in life, but for me it is the ascension to the top of the mountains. One only reaches the top by climbing.

Who can possibly ascend the mountain of the Eternal?
    Who can stand before Him in sacred spaces?
Only those whose hands have been washed and hearts made pure,
    men and women who are not given to lies or deception.
The Eternal will stand close to them with blessing and mercy at hand,
    and the God who redeems will right what has been wrong.
These are the people who chase after Him;
    [like Jacob, they look for the face of God].

Psalm 24:3-6, The Voice

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