Tuesday, May 28, 2013

We are the Cure

*this is an article I wrote that was printed in the May Cystinosis magazine put out by the Cystinosis Research Network

Why is it that anything painful or anyone in suffering is an automatic undesirable person or a negative occurrence? I have observed in my culture and society that good health is equivalent to a better person, a better life, or a successful life. As someone whose lifestyle is defined by “bad health” am I a bad person, or not living my life as I should, or not doing as much because of the “hindrance” of my daily pain?

     Pain is not always a negative. Through pain, a person experiences growth, healing, and a heightened sense of awareness and compassion. Those are all positives!

     Cystinosis has always appeared in my imagination as an ice crystal. It was something so cold to destroy my body yet so beautiful because it creates such special people.

     I am a 2010 graduate from Bible college and have attended Christian schools my whole life up until recently enrolling in University of Wisconsin’s creative writing program. Lately, I have been pondering what people mean when they say the following to me: “I’m sorry you’re so sick”, “I wish I could take your pain away”, and “Well, we’ll just pray God’s blessings on your health”. I know all is meant for my good, but none of these phrases are comforting or encouraging to me as a human being living with terminal illness.

     I am not sorry I am “so sick”. Living with cystinosis has done something for me that you cannot teach in a classroom or understand through any amount of Christian education. It was through the pain of throwing up, medicines, treatments, and hospital visits that reaching out to God became a lifestyle for me, not just a Sunday morning ritual. It was through the sorrows of not knowing if I would live past the age of twelve that I have groped for the Hand of God early in life. It was through the sufferings of living day by day to graduate high school and college that I became a brother to Jesus Christ. After all, a title of His is man of sorrows and did He not bring the ultimate positives of this life, as in love and hope and faith, through extreme negatives?

     I am a better person living a better life and am a success story to those living with chronic pain and troubles. Unhealthy people and people in tough times have the blessings of God upon them as well. It’s not always noticeable bestowments like good health and riches. God’s presence is intangible and He pours His love on ALL, not a select group in the earth’s population. Look at the wonderful fellowship and support the cystinosis community has? It is through the children diagnosed with the “negative” of cystinosis that such a loving family has been created.

     You know what I see now, in every ice crystal of cystinosis? I see a lush, green stem poking through a chipped crack in the ice, because those living with cystinosis are a cure for the healthy by living every day, each day of their lives.

     I agree with singer/songwriter Laura Story when she asks, “What if your blessings come through raindrops? What if Your healing comes through tears? What if a thousand sleepless nights are what it takes to know You’re near? What if trials of this life, are Your mercies in disguise?” Living with cystinosis is a redefined blessing and we are nearest God’s heart. Have a good day living your blessed life!

Thursday, May 16, 2013

Speech on May 15, 2013

My classmates in English 284 have left an impression on my heart this semester. Through the speeches I listened to from their lips, I have come to realize how amazing each shoulder I brush past on my way to class truly is. Below is the speech I made to my classmates. I wish I could post theirs as they have affected my life for the good.

" I stand before you today not because of a great marriage or a good family, church or government that allows my existence. I stand before you today, a living soul, because the greatest relationship in the world, one that surpasses any institution or structure known to the human race, has breathed into me the breath of life. Sound cryptic? Hopefully, my words will make more concrete sense as I tell you what I as a person truly value and aspire to be as my years go by.

I come and speak to you today having gone through a past of sexual and emotional abuse and having lived each moment of my life to date in a body that is terminally ill. I am a daughter of a wonderful and fairly average middle class mother and father. I am a sister to two annoying yet amazing brothers. I have been a member of Baptist and evangelical churches. I am a citizen of the United States of America.  This defines me but does not tell you anything about my life.

Life has to be defined. Life has to be lived in boundaries. How do you know who I am unless I tell you what family I came from, what church I go to or don’t go to, or what country I live in? On the flipside, life is not lived inside structure. Structures have flaws. It was in the structure of my loving family that a recommended babysitter, trusted by small town Wisconsin, took advantage of my five year old mind and body’s innocence. It was in the country of America that I was denied life, liberty and the pursuit of happiness with the three words I heard at the age of twelve: you have cancer. It was in the walls of churches that I consistently heard the words: you are wrong and you are selfish. 

Despite these flaws or sufferings that structures have let into my life, I have learned how to cherish ideas and concepts that do work in whatever category you find yourself defined in whether it is race, gender, sexuality, religion or political theory. I value truth.  Contrary to man’s speculations and theories there is a constant, unchanging God of the universe without limits Whose laws govern the ways of man. People and circumstances change; therefore, truth applied to different people’s lives will result in different outcomes because everyone has a different background, circumstance, and peoples in their life.

I value love. Who you love determines what you do. If you truly love someone, you put your rights aside so the object of your affection can have the best even if the best for their life is one where you are not in it. Is this not what Jesus Christ exemplified? I introduced myself as standing before you today because of a great relationship. I as well as every human being that has ever lived have broken standards and structures. Jesus saw this and instead of letting death and sin take me to rotten consequences and ultimately an eternity away from him He confined Himself in the body of man. God gave himself a gender and a race so He could perform the very act of love: dying on a cross and then defying death itself by being raised in eternal life all so that every human who was ever born could all come to a place of equality in such a defined space of inequality as earth. Every man standing before God is of equal value and worth and it is through Jesus that every man receives eternal life if he chooses to accept it. I did accept Christ’s love now I am living a forgiven life and a hopeful life. I am hopeful because I don’t have to depend on living a life by any nations or any person’s standard to feel fulfilled. I possess a freedom to love human kind because of Christ’s great relationship of love I embraced.

I value difference. General George Patton said, “If everyone is thinking alike, then somebody isn’t thinking.” The discriminations between people help us see abstract concepts such as love, hate, peace, conflict, ext. Fragmented pieces from others lives shows us our own shortcomings and encourage us to give support to one another. The absence of structure shows us how hopeless and chaotic the present can be. In the case of my experience with sexual abuse, I learned love is not equal to sex and it is only appropriate within a marriage structure. The presence of structure gives us a future and a place to perform and exist. In the case of my identity as a daughter and sister, I know I can be a caring, respectful human being, sharing myself in inside different human relationships. As a daughter I was taken care of in regards to terminal illness. My parents gave me my medical treatment every six hours until I learned how to be responsible for my own medical care. As a sister, I learned humility when I was treating my brothers wrongly and I also learned how to care for others when they are hurting whether I feel affection for them or not.

I aspire today to tell the world that where they came from, who they are, what they did can all have a purpose in Christ alone. Governments may have failed your expectations of human rights, churches may have offended you, families and friends may have hurt you. There is a place you can go when the castles you and I build in the sky come crumbling down in a constricting universe. Jesus Christ offers you His boundless and limitless truth and love and it’s yours if you just take it.

An Italian proverb says, "When the game is over, the king and the pawn go into the same box.” Whatever story your life has, when it comes down to your final breaths, consider the eternity of your never dying soul and embrace the truth and love found in the God Who created your soul."

Thursday, May 9, 2013

Poems about my New Found Love


He asks me to be myself
to not let his likes/dislikes influence me.
But who am I, really,
without someone suggesting, guiding, telling,
teaching, preaching, behaving.

"Do what you would do by yourself
without me here," he says,
"Then just include me into your life."

I would attend church at Wakanda on Sundays.
I would go to local theatre performances
at the State, at the Mabel, at the Grand.
I would drink coffee at the Raw Deal
and Grand Ave. Café.
I would read and write and dialogue.
I would stay in school for love of learning.

He tells me that's who he wants to be with,
that person who enjoys all those things
not the things he enjoys.

"Can I be a part of your world?" he asks.

"You already are," I say, "because you introduced
me to me."

My Boyfriend Shows Me How to Interpret My Mirror Image

Look. Just look in the mirror and see how cute
you are.

Rosy, red cheeks and nose, messed up hair.
You are cute.

Look. Just look at your life, how amazing it is.
You are wonderful.

Look. Just look at your smile.
You are happy.

See. I want you to see how you can give
the thing you want most to yourself: acceptance.

Just be you.

Just be the great person you are.

Surface to Face
suggested by Proverbs 27:19 "As in water face answereth to face,
so the heart of man to man."

He is a pool of water
clear to his sandy floor.
My face looks out of his eyes.
A reflection of my features
washed in his refreshing droplets.

"I want you to choose what is best for you
and what you need to feel healthy because
I choose you. Because I care for you very

The words he whispers
satisfy the parched dryness on my heart.

I Want to Experience HARVEST

Happiness. Just once experiencing those
                   scintillating thrills of the fruits of a rewarding relationship.
Acceptance. Allowing myself to just be
                     content with the effort I put in and he puts in.
Rest. A place to practice acceptance
         in the time and space we have created.
Vivacity. Feeling alive
                with the joy and love surrounding us.
Earnest. Sincerity in what I am living
              in relationship to Harvest and he to me.
Set. A firm, specified place or position
       knowing who we are in this dynamic.
Telepathy. Communicate thoughts and ideas by sheer wanting to do so
                   and to fill the empty time and space when we are apart.

Knowing Love

Feeling each fingertip of pressure
as my love pats my back
I sigh in his embrace encompassing my body.

In the silence of the moment a burst of one
thousand pieces of glass like silver
confetti rain on my lap.

I HATE cystinosis. I tremble at the word.
"I just realized for the first time that I hate
living with a terminal illness."

"Shhhh. Sweetie. Look at me.
We're here now, okay?
I wouldn't want to be with anybody else."

My shoulders stop heaving
My eyes stop streaming drops of pain
I fall against his chest and am happy in the moment.

For if such an intertwining of
two different lives could result
in such deep affection for the
other life, who better blessed
to bestow this love on than the girl
forced to face her own mortality
every eight hours?

Who would sing the praises of a man
lonely since birth and who would
write the wonder of a God in Heaven
Who showers His love on humankind
than the girl who confronts her
demons of her past every night?

No one else but the soul who
has endured evil within her
being and without her body
could accurately describe
how victorious a life can be
when love's desire is fulfilled.

The hairline fractures of her heart
are fused together with tears
and the tears of her eyes are stopped
with the kisses of her beloved and that
is contentment; that is life set free
by the glories of God her King.

Where the Past Lives

So you’re walking home from babysitting your neighbor’s three children. It’s midnight; dark shadows have enveloped every house, driveway, road, tree and blade of grass presenting the illusion that all and everything is asleep. This is only the dream of life after 10 p.m. The darkness is masking an electric energy that only comes alive when it can be hidden by shadows. The black trees silhouetted by the shining moon carve gnarled branches onto the earth. A hooting owl startles you. A cool breeze stirred by the passing of a car washes the magic of the night over your body. As your feet grind the road’s gravel, you can see dimly ahead at the shapes of pine trees dotting your yard. You step foot on your driveway and reminisce about those events that make up your life, those things done years ago, the past, the touch of his hand, the force of his words. Your words of resistance and your cries for help that never vocalized, stifled by his presence. Suddenly, you wish the night was over, that those things your mind brings up could be chased away with the rising of the sun. For the shadows of the trees and the sound of the wind and the dark places around the mailbox, houses, and your own body have recreated an image of what had been. It seems the very ghost of your past has escaped its closet and has robed itself back in his flesh to haunt you. You can see the form of his body in the black shapes of the gnarled branches spread out on the lawn. You can hear his voice in the sounds being carried to your ear on waves of chilly wind. Your body is shaking with the thought of him being present and still having control of your mind in this space you thought had ended years ago. You run for the front door and beg your thoughts to come back to the light of day where he no longer is waiting for you. As you step into the warm light of a lamp lit waiting for your return, you breathe deeply the smell of escape. You walk to your room and lay down on your bed willing sleep to engulf you and transport you to a place where the sun is shining and you are moving on and making your own choices. Morning comes quickly and it isn’t long until you are stretching and looking out onto the beauty of the maple oak that stands proudly in your front yard along with a cluster of pine trees. You smile as you watch the robins fluttering their wings in the aged tree branches. The mailman has just opened your mailbox and slipped in some envelopes. The neighbor’s houses have a charming quality as a line of laundry is waving in the wind next to their garage doors. “All it takes,” you mutter, “Is a slight invert of light, a shadow of blackness, to remind me of what used to be. If it used to be, it should no longer exist, but it does, the past is the present, in the corners of my mind. How do I escape the night?” You turn from the warmth of the sunlight in your window and face the reality of today.

Friday, May 3, 2013

Patriotic Prose and a Few Poems

I was going through some of my old notebooks from high school (13 years ago since I was a freshman!) and found this little essay about America and a couple poems I thought were neat from that moment in my life. 

The Young Man and the Flag
By: Rebekah Sharon Palmer
Suggested by Is. 53:1-6 and the song “Bring Back the Cross” recorded by Bob Gilley

Ezekiel 22:30 “And I sought for a man among them, that should make up the hedge, and stand in the gap before me for the land, that I should not destroy it: but I found none.”

Proverbs 29:18 “Where there is no vision, the people perish: but he that keepeth the law, happy is he.”

Psalms 33:12 “Blessed is the nation whose God is the Lord; and the people whom he hath chosen for his own inheritance.”

       Once upon a time there lived a young man, his wife, and their two precious daughters. One day, as the young man walked through town, he spotted the majestic flag, Old Glory, under which he served. Stirred within his heart to recite the pledge, the young man was compelled to stop beside the road and honor his flag. After he finished, the demeanor of the flag seemed to change from proudly waving to dejectedly hanging. The once bright, glorious flag looked tainted and torn. As rain began to fall and slosh on the flag, it seemed to the young man that Old Glory was weeping. While he stood there gazing at her, the Star-Spangle Banner began to speak, “I’ve flown for this great country and out of all the years I’ve flown, this generation lacks great patriot heroes like the great soldiers and citizens of long ago. I receive no honor and I receive no loyalty, but more than these the most precious thing I lost was the thing that made me glorious and that is the Cross.”
        Stunned by the blunt and audible words of Old Glory, the young man kneeled by the side of the road, tears of confusion on his face. He looked up at Old Glory and asked, “What do you mean? America is still fighting under red, white, and blue! What’s this Cross we have taken from you?”
        The rain began to pour now, a puddle in each drop, and the American Flag began to sob, “The Cross you have taken from me is the Cross that built this very country. God died on that Cross in the form of His Son and freed men’s sinful souls with his own precious blood. America spells out freedom because of His sacrifice. Now Americans have taken Him out of schools, and are trying to take Him from my pledge. Americans have even taken Him out of some churches and the younger patriots minds. I’m trying to fly for a great country ruled under God’s strong hand, but I can’t fly for her proudly when God is not in control of this land.”
          His face now contorted in anger, the young man quickly said, “I still don’t understand. God isn’t taken out of schools. Children can pray, can go to church, and can learn in their own way. I don’t see how the Cross and America must together stay.”
         “I’m afraid it’s you who doesn’t understand,” the stripes of red and white replied, “prayer is being eliminated, too. Yes, you can pray, but not for the One who shed his blood and lives now for you, the One Who started our stripes of red as He was nailed to the tree, thus beginning the scarlet path of patriot’s blood flowing free. The people who started this once great country taught their children all about God and placed them in their minds. The people took their children to church, no argument made, the children said “Yes, sir” and went. Respectful and virtuous citizens couldn’t have been pure if it weren’t for the Christ who saved there lives. That’s where our stripes of white have started, purity in Christ and virtuous lives.”
         There was a pause and then the field of blue began to speak to the young man, “The royalty of Christ is when you become one of His and this gives a person respect and love for his country held dear.”
          The stars in their shining splendor twinkled and proudly said, “The Cross is the reason we sparkle so bright and the Cross is what our country and states have believed in.”
           Then the whole American Flag recited to the young man, “What is America doing now? She’s killing her own and calling it legal. She’s indulging in sin and believing in lies. She’s allowing wrong philosophies and everyone’s rights dictate her direction instead of Almighty God. Why aren’t Americans “In God We Trust” and “United We Stand”? It’s worked before…but then America had Christ.”
             As the impact of the Flag’s proclamations sank into the young man’s heart, he realized he needed to stand up and do his part. With a sobbing head bowed low the young man determined to bring back the Cross to America. But first he brought the Cross into his own life. Old Glory started smiling and the sun started shining. With his head raised high, the young man gave his life to God, Who alone saved his soul and Who alone can save this nation.
              What America needs today is other Americans, who, like the young man, bring back the Cross to their own lives and to our nation; for only then will America become “one nation under God, indivisible, with liberty and justice for all.”

Ecclesiastes 12:13 “Let us hear the conclusion of the whole matter: Fear God, and keep his commandments: for this is the whole duty of man.”

2 Chronicles 7:14 “If my people, which are called by my name, shall humble themselves, and pray, and seek my face, and turn from their wicked ways; then will I hear from heaven, and will forgive their sin, and will heal their land.” 

Moments of Time to Cherish
September 20, 2000

Time, what’s it really mean?
Time, not a thing to me
Time, just one more thing to waste,
Time, what’s it really mean?

Moments, precious parts of time,
Moments, those memories divine,
Moments, golden themes of life,
Moments, precious parts of time.

Jesus came, was that a waste of time?
Jesus died, what’s it mean to me?
Jesus lives, did He do it in vain?
Jesus came, was that a waste of time?

Cherish, cherish the time I was saved,
Cherish, the time I made Jesus mine,
Cherish, my walk with Him,
Cherish, all his love for me.

Why? (January 2001)

Why did God send His Son?
His one and only begotten One?
To die upon a mean, ugly tree,
just to save a sinner such as me?

Why does God love me so?
When I turn from Him as I go?
Why did He make me?
Why, I ask?

God answers still.

I sent my Son because I love you,
I love you because I made you,
I made you because I want you to love me.

Why not accept God’s gift of love so true and free? 

September 11, 2001
-account on that day
May 15, 2002

My school, Immanuel Baptist Church School, in Menomonie, WI:

Everyone in their seats is silent,
not a word whispered at such violence
How could they do it?
to America the land of immortality?

Eyes are glued to the school’s TV.
gasps of horror escape each mouth,
knuckles turn white as each student
How could this happen today?

Moments before, students in New York
were preparing for class,
but in one shattering moment
they’re blue sky turned black.
School’s out! No one shouts
but fear and trembling all run
Where was God on September 11?
How could He who blessed us,
turn against us?

I’ll tell you where God was that
In the same place He was 2,000 years
ago when His Son died for you and
for me.

America, God wants your attention.
Bring back the glory we once knew.
America bring back the cross again.

 February 6, 2004 (My Junior year of High School)

The King’s Word is the highest Truth.
It is pages of the Prince’s Promises.
It will always be a piercing two edged sword,
Slashing and clashing against the cruel, wicked stone of man’s heart.
It will always be a steaming, steel hammer—
Shattering to bits the unbreakable stone.
It will always be a flaming fire—
Engulfing the icy stone.
Yet it is a crisp, cool, bubbly liquid,
Gushing over the stone made soft.
Yet it is soft, willowy feathers of a mother bird,
Comforting souls in anguish and despair.