The inspiration for this post comes from watching the trailer, The Theory of Everything, the story of Stephen Hawkins. It brings me to tears every time I watch it. Though I'm incredibly blessed to have a non terminal illness, and don't need to rely on machines or procedures to keep me alive, in some ways, the early life of Hawkings hits home for me like a loud thunderclap. The small similitude between his struggle and mine, reminded me of all I do have to be grateful for. The scene where he collapses to the ground is where I start crying every time. For 12 years, my diagnosis was only getting better, and then seemingly overnight, BANG! Ambulance sirens wailed as I convulsed on a gurney. My strength was deteriorating right before everyone's eyes and my medical team was worried, as was I of the plummet. One day after my first set of convulsions, I realized my right foot was stiff, and I was slow to rotate the ankle. The next morning, it was so stiff, no matter how hard I tried, it refused to move. I then found out that I was slowly losing sensation in it, and the "paralysis" continued. My doctor was aware that as a toddler, I couldn't move either of my legs from my muscle tightness being so high, and she warned that perhaps spastic paralysis was spreading through my feet and legs again, if that was ever possible.
I was only 13, sitting in the back of the family van, headed to an accredited Children's Hospital known for their neurology department, and praying that my diagnosis wasn't in fact degenerative or fatal. I thought about all I had learned to do despite my handicap. I marveled my therapists with my speed while using a walker, and while I was getting jabbed in the sole of my foot with the butt of the neurologist's pen, my medical team was folding up my walker, storing it in a closet and proceeding to order a power wheelchair. The doctor pinched my toe and I didn't respond. He pinched the top of my foot and there was little response. He rotated my ankle and we both felt the tension, like it had become a rusty bolt too embedded to unscrew. He sighed long and deep and a lump grew in my throat. He said, "good news and bad news. The bad news is that you've got drop foot and I'm not wanting you to walk without adult supervision until further notice. The good news is that it shouldn't 'spread' up the legs, and is reversible with intense physical therapy. It may occur in the left foot, at which time I'd say, 'uh-oh,' but it's unlikely, considering the left is your strong side."
I received my power chair with mixed emotion. All the long years of hard work and being of similar ability to my classmates seemed to dissipate like steam, and my little twig-legs were at their weakest yet. The last day I walked at school, I was entering Spanish class and tripped over my foot, lunging forward toward the floor. Thankfully, my teacher grabbed me, breaking my fall by holding me bent over in his arms, and my aid simply said, "that's it. It's just not safe."
From that point, my autonomy began trickling away from me. I would have at least one convulsive episode per day, if not more, and the paramedics rushing me out of the school with an oxygen tank on my legs became a common site. In one case, two whole hallways had to be blocked off, as I and another child convulsed in adjacent halls, our aids surrounding us, tissues exploding from their boxes to clear our mouths, and nurses announcing over walkie-talkie, "arrange a detour for the kids. Two students convulsing. Be ready to call emergency. This is bad."
I spent two holidays in the ER getting ultrasounds, wheeling through the hospital halls, thinking, Dear Lord, where are You?! My life was spinning out of control and the fear and illness I had plagued me. As if things couldn't get any worse, only a couple years later, right at the start of a new year, I lost one of my dearest friends, who had been my buoy since I was nearly 7 years of age. A big brother almost, my friend just left my life - no goodbye, no reason why. So very overwhelmed, a few months later, I nearly succeeded in drowning myself. The light was gone, along with my hope. I felt torn from God, my only comfort and inside, I was flailing, screaming, Father! I can't do this anymore. My mother found the suicide note and raced into the bathroom to see me slumped over sitting in the bath water, sobbing, so tired. So utterly, incredibly exhausted. It'd be 3 years before I would tell anyone of what happened as my airways closed up beneath the water that night and the black crept thickly across my being.
I made a silent cry out to The Lord while purposely submerged and pinned under the water. A cry so loud, it sped through every inch, cell, and organ in my body like a lightning bolt. It was the last of my strength, my courage, my trust. Desperate, I still clung to the tattered string that connected me to The Father, emotionally; I had shredded my faith in Him until the fibers glistened with my sweat and tears, becoming only remnants of a little girl child's adoration of God, His Power and Care for her since her first breath. And here I was, minutes away from going into respiratory arrest, and His calmness drifted over me as a sheet of silk, soothing, "Dear Daughter, Push up." And with that, my heart so yearning, grabbed hold of that believing and my right arm (previously of no more use to me than a paper weight), received a strength provided only by Him to the end that I literally pushed my torso upward enough to free my good arm from the space under my lumbar, and breathe.
As my mother hugged me that night, I thought, "Father, this pain is still so heavy. I need relief, more than anyone knows." Not that long afterward, a man's smile lit up my world like fireworks and lead me through the Scriptures like I had never heard in my life. My jaw was on the floor, through to the center of the earth, and tears swelled up in my eyes. I listened, I listened, I listened. Then Dylan took the reigns and God told him, "listen here, son...". The deep a terrible black hole that dug far into my heart in the aftermath of my friend excommunicating me from his life, began to seal up, like quick sand spitting up.
Dylan took his ears and put them between us until my words would be bubbling out of them, until my entire life story was playing like a movie in his sleep, until he would know just what was on my mind by peering into my eyes. Some days he'd be silent, others he'd hold my hand, and in others he'd speak the truth. The hard, raw, uncensored truth of my agony, on which I'd asphyxiate, and then open up the Bible and clothe me in It's goodness. He'd either leave me to take care of my pain myself, share the heartache in prayer or a strong hug, or call me and tell me the blessings God gave him during the week - however God wanted him to approach me, Dylan would do his best to follow through. He was my lockbox, my source to vent, my bridge in troubled water until I learned to walk on the waves myself years later. Dylan took me to the fair, pushing me out of my comfort zone, joining in my joy when I conquered a fear. Through his walk with God, I learned to laugh again, smile again and say, "All's well, because God's fighting for me, with me, God in Christ is in me."
After renewing my faith and trust in God and as The Lord pulled the plug on the drain so as to smother the debilitating illness and sadness from my life, Dylan took me by the hand and said, "stand up and hug me." I could never stand up and wrap both hands around someone. It was impossible. I told him so, and he simply reached down, planted my feet on the floor, hoisted me upright and put his arms out to hug me. And I reciprocated it. I hugged him on my own feet, and he said, "now walk." Thinking he was crazy, I tried anyway. For my entire life, my legs were anchors, clumsy and heavy as elephants, as weak as blades of grass. My ankles felt as though they consisted solely of two thin linked chains expected to hold up 110 pounds. A balancing act on the ground, really. A tight-rope walker, is what I was, only there wasn't any need for me to be hundreds of feet up... All I needed was to stand up and have someone say, "now walk."
Oh, heck. In the past, my body moved like a game a jenga - piled high, appearing strong only to crumble at the play of one wrong move. But the first move was played, Dylan's arms out on either side of me like my balancing pole, refusing to touch me, though. Like a shadow, he followed at my pace. The second play was made and down I went, quick and hard with a thud and no time to think. Dylan stood there chuckling, and I laughed, thinking, "Babies get up. Get up." Round two, and boom, to the floor, I went, sweaty and hot, tired and cranky, still laughing with him, like "dude, heck, no. You're asking a dog to meow." But up I stood, and reached out to him. He backed away quickly. I moaned. Every part of my brain was scrambling, screaming: WE'RE WALKING?! THAT'S NOT ON FILE, HERE! Oh, my! WHAT ARE YOU DOING!!? I was saying, "walking on water. Get with the program!" The filing cabinets in the grooves of my brain were all open, documents of yes movements, no movements and movements classified under oh, he'll no, we're spilling forth everywhere, my mind was smoking from too much "recalculating...". Although the smoke was coming out my ears, the sprinklers raining out my pores, I fought.
Round three, and I made it to the couch, lightly leaning against Dylan's side. Cheating, but still. My left ankle was flipping out, crying UNCLE, UNCLE, UNCCCLLEE! But I bowed in prayer and stood again. To my surprise, Dylan moved the coffee table away, so I wouldn't be able to reach out. This was filed under Oh, hell, no. But in that moment, another play was made. And another, and another, and another. My feet were stepping, dragging, but stepping. Again, I stepped. Again. Dylan exclaimed, "keep going..." but inside I'm sure he was like, "yeah, man!" Every message in my brain stood in silence as they realized, "um... Dang... Is she... 'walking'? One foot in front of the other? Shoot, man! She's 'walking'! That's a real thing?!" After 7 steps without reaching or leaning on Dylan, I collapsed from exhaustion, and we burst out into high-pitched, Christmasy laughter.
And so began his journey to train my brain. From his focus on my legs, came his attention to my right arm, working with me in my believing for healing, motivating me standing by me, walking with me, pushing me further and further. I soon realized how The Lord was truly working in Dylan when it came to my recovery.
In November of 2013, a Bioness unit was clamped around my arm and wrist, sending pulsating electrical stim through my limb. Painful, after a few tear drops, my fingers opened and my wrist went up. Down. Up. Down. I went home and immediately started my own vibration therapy to train my arm. I worked it and worked it, did research on the brain, our thoughts and the electrical responses in our brain from our thoughts. In only a week, I could do a baby-wave on command, and open and close my hand slightly. Weeks later, I learned to cup my kneecap, grab and carry 1 pound for 60 seconds and rub someone's back, slowly like a pendulum. Just recently, after 2.5 consecutive hours of vibration therapy and deliberate verbal command, I watched my once useless hand turn inward for the very first time.
Getting back to the inspiration for this post, whenever I see this trailer, I think of Dylan. No words can describe in full just how overwhelmingly thankful I am to God for putting him so prominently in my life. This man, though still human, will forever have a special place in my heart for his guidance, friendship and dedication. He is an incredible example of Christ's love and carries himself so tenderly, so boldly and so in tune with God. I'm not saying he's superhuman, because he's not and will never be perfect until the Return of Christ, but this trailer perfectly reflects my gratitude to him for all he's done.
Following depression, God rained the sun down on me; Following a crushed and beaten heart, He draped it in courage; Following fear and a dilapidating faith in Him, He gave me a Brother to lean on, with whom I would later walk beside. Through my public speaking and social media, I have gotten numerous messages from people of all ages, anonymous and famous, telling me I am the reason they smile, fight on, move forward, have hope. But I am only a person. A person who wouldn't be alive right now if it hadn't been for The Lord and my realizing I can't get through the storms on my own. Through weak and fragile words in the wake of convulsive episodes, suction and exhaustion, I often lie slumped on a hospital gurney or in my wheelchair, saying, "so sorry" to whoever guides me through the thunder. Now, I'm saying, "thank you." Thank you, to Dylan in particular, for standing by me, a lighthouse in the fog, head down in prayer, hands over my own, praying, "remind her of Your power, Lord, and of the power she has in Christ..." to believe in it, persevere, and find my story to tell.
Happy 24th, dear friend. Here's to many more fair rides, laughs, hardwork paid off, spiritual growth and years of friendship, in whatever paths we go down. You will continue to be in my heart, my prayers and a reason I love God so truly much, until the day I die... Or until we meet each other in the air at Christ's Return.
Watch the trailer here: https://m.youtube.com/watch?v=hpHwdcKDRfI