Dose #6 of the Super-Soldier Serum

Today I got my sixth dose of Spinraza - it's been 10 months since I began this journey with the first dose!

The lab work was a success - as in, it only took three attempts to find and retrieve two tubes of my platelets... So that's good, right? I think I'm becoming notorious around the lab. The lady who called me back actually remembered me from four months ago, and promptly rounded up three other phlebotomists to assist her. Special thanks to the one who gave me a "Skylander" Band-Aid, and major kudos to the feisty little lady who stabbed me fearlessly and wouldn't take "No" for an answer from my shy and elusive veins. I saw my neurologist on the elevator afterward, and observing my multiple bandages and bruises, he casually said, "So... I see you got your labs done." Mom treated me to a cherry danish and tea afterwards, which is becoming my regular post-blood-draw reward for NOT crying or biting anyone. Overall, not a terrible morning.

Three hours later, I was in Diagnostic Neurology, signing my name in acknowledgement that this treatment could result in headaches, bleeding, infection, or DEATH. My doctor is always quick to add that the "death" part hasn't happened to any of his patients so far, blah-blah-blah... I waved him off and signed with a flourish. Please, give me this moment to face Death and feel just that brave! Again, that epic scene from Captain America flashed through my memory, and I smiled as I told myself that it's "super-soldier serum" time. I was really quite proud of how cool I was being about the whole thing.

One more hour later, and I'm laying on my side, facing a taupe-colored wall ("They say taupe is very soothing"). I can't see what's going on, and no one is giving me any verbal hints. I know there's a small needle in my lower back, and we're somewhere in the process of either sucking out cerebral spinal fluid or injecting Spinraza. It doesn't hurt me at all... I felt the initial stick of the needle, but honestly that is it. My doctor is very careful and cautious and takes his time to make sure everything goes all right, so I just need to lay still and stay calm and not be the annoying kid who keeps asking "are we there yet?". So while I try to find patterns and count the various shades of brown in the wallpaper, I reflect...

Last year at this time, I was still in consultation mode with the neurologists. Lots of unknowns, but also lots of optimism. I knew there would be risks, but I didn't know how complicated, long-term, or painful it would be. The past year has been quite a roller coaster ever since... as the Lord uses this medicine to strengthen and sustain my body, he seems to have a correlating (if not increased) interest in the condition of my heart... to remind me to find my strength, purpose, joy and hope in Him. Again and again, he proves himself almighty and faithful to me.

Today's treatment went well, with no problems. I had a little trouble with my breathing shortly afterward, and felt tired and emotional the rest of the afternoon, but the doctor thinks that's all due to stress relief... I guess I was more anxious and stressed out beforehand than I wanted to admit. But all in all, I'm curious, and yes, even excited to see what happens in my life in the next four months before my next injection... I'll be sure to keep you posted!

The Opposite of Fear

Week 4 of fasting from my plans, and today the message from Ruth 3:18 and Philippians 3:20 for me is "wait." Wait for what? What for the Lord. To do what? Just... wait for him. But what am I waiting on him for? Nothing but himself. He's all I need, so my waiting, hoping, and expecting needs to simply be for him... Ok, Father, today I'll wait...

I've been thinking about fear this week... and how my sin is often rooted in fear. And do you know that the Bible commands - commands - me to not fear, not be afraid, and fear not, over 100 times? So, fear is a sin, and apparently one that is common enough and serious enough that God reminds us over and over again to just not do it. And I think one reason for that is that fear has a lot of power to cut us down, cripple us, and make us forget who we are. It's a stronghold that has a very... strong hold.

So what's the opposite of fear? If I choose not to fear, if I give my fears to God and sacrifice them on the altar of my heart, what will replace it? One of my craziest fears is that if I let go of my fear, I'll not have anything left... but I know this is a lie, because God never leaves a void in us. Emptiness is meant to be filled by him. So... how does he fill the newly-vacant throne of fear? Crazy enough, the words that came to my mind were the titles of the stories I recently posted: Joy, Trust, Hope, Grace, and Peace. Aren't each of these the opposite of Fear? I also think of Courage and Freedom (so maybe I should write a couple more stories?).

So this week I feel like my prayers are stronger... instead of just asking God to wrench fear from my hands, I've been asking him for an exchange - my fears for his hope; my fears for his joy, my fears for his peace... It seems like an unfair trade, but his resources are endless and he is so generous, I don't think he minds. In fact, I get the feeling he is pleased... And guess what is starting to fill up my heart?!

coffee pots, broken spells, and fasting from my plans

It's a classic rainy day in Fort Wayne. The raindrops pattering on the windowsill sound to me like a percolating coffee pot, and the swish of water under the tires of cars passing my house on Columbia Ave sounds to me like the magic sound effects on "Once Upon a Time" - the sound of a curse being lifted... sounds of everyday enchantment. Today is Thursday, my day to be alone at home and do things that are quiet. I want to sit by the window and write poetry, or curl up in a blanket on the couch and take a long catnap. But I need to grade papers today. But not quite yet... right now, I need a minute to listen to coffee percolating and spells breaking. And I need a minute to be still and quiet before the LORD.

I am trying out this discipline of going six weeks without trying to figure out my life - sort of a fast from making my own plans. I'm on week three, day 18, and it's tough. It seems backward, I know - normally people will take a set amount of time to pray and fast to seek direction and guidance. But I'm a planner by nature, and am much happier when I know what is happening and what to expect and what I should do... and I've been restless and anxious for the past eight months because I have no idea. I've been given some suggestions, and have some ideas of my own, but haven't been able to make any decisions or received any solid answers. And it is driving. me. crazy.

And I realized how much this reveals about my lack of faith in God. I want him to tell me things and show me things, and he really just wants me to sit in the backseat, enjoy the ride, and let him drive. So that's what this six weeks is about - just practicing the discipline of trusting God. That means when I read the Bible, I'm not combing the text for clues to answers I want; it means when I pray, I worship instead of complaining about how confused I am; it means I spend my personal reflection time on all the ways he has been faithful and trustworthy in my life so far, instead of worrying about how he'll be faithful tomorrow and six months from now.

It's hard to not plan and not know - it's a part of my brain I have become so aware of because I have to keep going back and telling it to calm down and take a break. But I think this is what is necessary in this season of my life... and I'd be so grateful for your prayers during this time.

"Wait for the LORD; be strong and take heart, and wait for the LORD." - Psalm 27:14

"Trust in the LORD with all your heart, and lean not on your own understanding; in all your ways submit to him, and he will make your path straight." - Proverbs 3:5-6

Trust (Part 4)

“Come here, my son,” he heard instead, “and tell me what you want.”

“I’m so sorry, your Majesty,” he said in a shaky voice. “That song was my very best gift – but it was wretched. I have nothing else to offer… I have nothing of worth to give.”

“No one ever does,” the King said gently, and when Rusty looked up, the King was smiling. “Your friend, Legalia, for instance, sends me a mud pie every year for my birthday, convinced I will gobble it all up. And her poor father, Mr. Boastifous… what he considers high quality linen is nothing more than dirty rags.”

“Then who can earn your favor?”

“No one can.” With these words, Rusty’s hope fell and despair grew. Then the King continued. “But I never asked my people to earn my favor. It has been theirs to have all along. That is why the streams of my joy give life to them and their crops every year. That is why my groundskeepers and gardeners keep the path from the village to my castle clean and clear – so that they may come anytime.”

The lad was disturbed and confused. “Then why do they work so hard to earn what is already theirs?”

“It is because every other king in the world would demand it. Ah!” He smiled and raised a finger to his twinkling eye. “But I am not just any other king! They have forgotten this, because they do not spend time with me anymore. If they would just come to me, talk with me, eat at my table… I would- I would… I would serve them chocolate pie like they’ve never tasted before! Ha!” He slapped his knee and winked at Rusty.

“Now, my son,” He motioned for the young man to come closer, “Legalia almost got your name right, but not quite. You are Trust – that is your real name, your identity, and your purpose.”

The lad felt as though he had received a marvelous gift but hadn’t fully opened it yet. “Great King, I am honored to know this, but still I don’t understand. What does Trust look like?”

“My son, it looks like you!” the Great King laughed. “It is a small and weak man, depending on me for strength, coming to me for wisdom, looking to me for hope. The song you tried to play is not your own – that is why it never gave you life and joy. It is not the song I want to give to you – that is why it was just noise in my presence. I have two gifts for you…” And on His cue, a servant brought a long, narrow case.

The King opened it and took out a long staff, made of dark cherry wood, inlaid with gold, and finely carved along its length were all the wonderful names of the King. “Your weakness is not a curse, accident, or problem. It is a gift and a blessing, and this staff will remind you as you walk through life to lean heavily on me. Trust me.”

Trust dropped his old crutch and took hold of the new staff. The King reached in once more and brought out a small rectangular instrument that fit comfortably in the hand, shiny and metallic, with fine wood slats framing its edges.

“This instrument is for you to play songs for me and about me. Every note it plays will be pleasing to my ear. It is in the key of G – the key of Grace – so be sure to play it often. It will bring life and joy to you, and it will remind others to trust me.”

Trust used his new staff to support him as he knelt before the Great King and received the instrument.

“Trust, I send you out now to play music in the streets of the village and beyond. Come and visit me often; I am with you always, but I want you to desire to be here with me, too.” He rose from his throne and embraced Trust. “Remember: I love you, because you are mine.”

As Trust left the castle, he put the new instrument to his lips and blew. A warm hum filled the air and shook the shadows of doubt and despair from his soul. As he simply breathed in and out, the notes blended and flowed together, creating harmonies that played and danced and laughed, and poured joy into the emptiness of Trust’s heart until it overflowed. He had been named, healed, and given purpose – all he had hoped for, and more. And for the rest of his life, he responded to the gift by playing the music of grace, and walking with strong faith in the Great King. 

Trust (Part 3)

The path was long, but pleasant – no rocks or roots to make the young man stumble. He recognized many of the plants by their smell from his childhood with the elves and could name each one. He had asked his tutor once, “Why does every flower have a name, but I don’t?” “It is because,” the tutor explained, “everything receives its name from the Great King. He gave you a name but you don’t remember it and we did not learn it when you came to us. Someday He will tell you.”

For all the wisdom the elves possessed, the freckle-faced lad was a mystery to them. They had found him alone as a baby on the border of their colony. He was nearly dead, and they nursed him back to health, but the strength of his legs was never recovered. No medicine, spell, or song could heal the weakness.

The laughter of the streams that flowed down the hill reminded the boy of the only home he had ever known, and he missed it. He missed his friends and all the laughter and music. But he knew he had to take this journey, and as weary as he was, he finally found himself at the large front gate.

“Yes? What do you want?” the doorman asked directly, but not in a harsh tone.

“I- I wish to speak with the Great King,” Rusty said, suddenly very unsure that this was a good plan.

“Right this way,” the doorman responded and led him into the throne room. It was not large, but very elegant, with golden candelabras glistening light that reflected off the polished marble floor and a crimson red velvet carpet that led straight to the throne of-

“The Great King!” Rusty gasped. “Your Majesty! If you please, I- I have a song to play for you!” Quickly, before any protest could be spoken, he fumbled for his whistle, put it to his lips, and began to play the Elvish song.

But curiously, when he blew the first note, it wavered, then screeched, then plunged, then weakly warbled, and then choked. He stopped in embarrassment, licked his lips, and tried again, but again the noise that ensued was coarse and vulgar, painful to both the ears and the soul. His cheeks burned with shame, and he stood silently with his gaze on the carpet under his feet, waiting for the King to cast him out. 

Trust (Part 2)

“Oh sir, wait!” a little girl cried out, broke away from the murmuring crowd, and ran to stand in front of the stranger. “You can’t just go up there as you are – do you know what that is? That is the home of the Great King!”

“That is precisely why I must go up there. Now, excuse me,” the young man said calmly, and with a strain of sadness on his face.

“But sir,” the girl persisted, “the Great King only speaks to important and special people, worthy nobility.” With a skeptical expression, she put her hands on her hips. “Are you a worthy noble?”

“I- I don’t think so,” the lad hesitated. “But honestly, I don’t know who I am.”

“You don’t know who you are! How very sad! That is no good at all. To see the King, you must know who you are, and you must take a very great gift – and hope it is good enough to earn his favor.”

“But- I had hoped he could tell me who I am. The elves said he could.”

“The elves? How do you know the elves? Are they lovely, magical creatures?” the girl sighed and squirmed with delighted curiosity.

The rusty-haired lad realized she was not going to let him pass until she was satisfied, so he eased down to sit on the cobblestone, and rested his tired body against a wall. “They are indeed lovely and magical,” he responded. “They rescued me when I was a baby and raised me. I learned their language and their songs. And though they loved me as their own, I knew my destiny was not the same as theirs. Their songs give life to them, but not to me. I am weak, and am getting weaker. I need to know who I am, why I am weak, how I can be strong, and what was I created to do. The elves said that the Great King is the only one who can help me, but they didn’t tell me I had to bring a gift. I have traveled so far and have nothing of value to give.”

The girl was still enchanted by the thought of elves. “You know their language? And their songs? Play one for me, please!”

So he did. He drew a whistle out of his pocket and placed his long skinny fingers along the holes. He took in a slow, deep breath and blew gently, and a clear, high note rang out. It dipped and rose and flew and twirled in a magical way that made the little girl feel beautiful and powerful. When the song ended she sighed dreamily and then bounced to her feet with a sudden idea: “Play that song for Him!”

“Him? Who? The King?” the lad asked as he replaced his instrument.

“Yes, He will love it, I am sure! And then he will accept you!” She clapped her hands, giggled, and helped the boy to his feet. Her excitement made him smile a crooked grin and renewed just enough of his hope to get him moving in his rhythmic hobble again.

“Good-bye, Rusty!” she said. “I will call you Rusty because of your funny hair. My name is Legalia, and my daddy is the most successful businessman in the village, so that makes me special. I hope I’ll get to talk to you again. I’ve always wondered what the Great King is like! Maybe you can tell me when you return.”

“You mean you’ve never met him? But He is so close! And I thought you said you were special?”

She straightened her back in defiance. “I am special! He just… doesn’t know it yet. But I keep making him chocolate pies, and one day he will realize I am a great chef, and then He will love me. Good-bye, Rusty.”

“Good-bye, Legalia,” he responded as she ran back into the crowd of villagers. 

Trust (Part 1)

Once upon a time, there was a Great King, who reigned over the Great Kingdom, lived in a great castle, high on a great hill on the fringe of a great forest. Up the hill was a path, always smooth and steady, so that anyone could travel it to see the King at any time. The path was bordered on both sides by fragrant gardenias and dancing daffodils and splendid azaleas, and blossoming fruit trees that yielded sweet cherries, peaches and plums. Streams of laughing water flowed from the hill as well and brought refreshment and life to the village below. And though the scene was beautiful and the path was accessible and the King was very good, there was a time in the history of the Great Kingdom when the citizens rarely took the journey, and hardly noticed the great castle at all.

Business was prosperous in the village – the streams produced rich soil, which produced healthy crops, which produced bountiful harvests. The people were hard workers, very intelligent and very skilled, so they created products of the most excellent quality to sell and trade. They lived for the business, and were consumed with doing: growing more crops, making better products, gaining more money, and buying more things, to improve on and start the process all over again. After the annual Market Festival, servants were hired to carry a tithe of the wealth to the King’s castle along with letters from the villagers that read something like this:

O Great King, live forever!

This year the business was very good. I harvested more cotton this season than ever before from my fields. I used a machine I invented to spin the cotton into thread, and then I used a machine I bought at a great price to weave it into the delicate fabric you see here before you. I also dyed it into these gorgeous hues that I collected and mixed myself. I hope that when you see the high quality of my handwork, and know of the great sacrifices I’ve made, that you will see my worth and grant my family a place among your royal nobility.

Your most prosperous citizen,

Constantine Boastifous

These gifts and notes were sent year after year, but the citizens were always disappointed by the silence and restraint of the Great King.

One day a young man came into the village alone. He had rust-colored ringlets of hair that fell across his forehead and around his ears in a charming way, and freckles across the bridge of his nose. He wore curious foreign clothing, including a long moss-green hooded cloak that only a few of the villagers could recognize as coming from the Elvish colony on the other side of the river. He was certainly not an elf – that was clear from his freckled complexion, rounded ears, and his knobby, angular joints. But there was also the way he moved: he did not glide gracefully and with power, but hobbled along with an Elvish carved crutch of oak tucked under his arm.

“Who is he?… What is he doing here?… What is wrong with him?… What does he want?…” These questions were loudly thought and quietly whispered throughout the village, but no one dared to ask the stranger. Besides, he didn’t appear to be looking for a place to settle down. Without a word and with his eyes fixed straight ahead, he rhythmically moved the crutch and his legs down the main street of the village and out toward that smooth path, that tall hill, that great castle.