Small Beginnings

I have been an Auburn fan since middle school.  Growing up in Kentucky, no one cared much about college football, but I loved Bo Jackson and that made me an Auburn fan.  Now Auburn fans are a unique bunch.  We don’t like getting our hopes up too high and we certainly don’t like broadcasting high expectations as we might just mojo ourselves and then have to deal with that other school from across the state smugly trolling us when we don’t live up to stated goals.  Years of following Auburn have led me to set the bar low so that I am never disappointed.

Our prayer was that I would walk out of the hospital at the NIH. That didn’t happen.  My hope was that I wouldn’t need a wheelchair at home.  That would not be the case. I had prayed that I wouldn’t need round the clock care so that I could be left by myself and not be a financial and physical burden to my family.  Not gonna happen.

I returned home following my time at Vanderbilt able to move my arms only minuscule amounts, no where near strong enough to take care of myself, or drive my wheelchair without the sip and puff controls.  The mouth controls were a blessing, as it allowed me to have some control, but my lungs were still too weak to allow me to go anywhere very quickly.  As soon as I settled back into our school routines at home, Cindy took up her residence at her Martin apartment again, caring for my basic needs during the week and then returning home to Hopkinsville on the weekends.  My insurance allowed for outpatient physical therapy and occupational therapy two days a week, so for two hours a day, twice a week, I would get carted over to Star Physical Therapy for as much of a workout as I could get without getting out of my chair.  

Slowly my upper body began to respond to the therapy.  My OT, Greg, would challenge me to move rings along a half a hola-hoop and manipulate pulleys up and down.  My arms began to get stronger and the muscle tone that had been causing my arms to pull inward toward my core began to relax.  Eventually, I learned to drive my chair with my hand, at first requiring someone to place my hand on the controls, as I lacked the strength to lift my arm that high, and then later placing my own hand on the controls.  As the first storms of spring began to blow into Union City, the sip and puff controls were being rendered more and more unnecessary for my locomotion and I became able to get around much more efficiently with the manual controls.

It was’t always easy, however, often I would get tired and when that happened I would revert back to the “circle of death” requiring someone to rescue me.  A couple of times when I would get cold or fatigued my muscles would spasm causing me to run over unexpecting children at church and once jumping my chair over a parking curb in the lot.  It was slow going, but I was becoming more and more capable with my hands.  It seemed like daily I was trying new things: putting my arms through my own shirt sleeves, buttoning buttons on my shirt, brushing my own teeth, and even feeding myself.

It all happened so quickly that it was easy to miss the progress.  One day I was on a FaceTime call with my mother where she saw me scratch my own face.  One day Cindy actually paused to take a picture of me eating a sandwich at my desk at church, feeding myself.  God was bringing my arms back to life.

But my legs were still not responding to my brain’s signals.  No matter how hard I tried, I couldn’t seem to move anything below my waist.  It was odd, because I had feeling, I felt pain and temperature changes, but that was the extent of it.  As I struggled finding sleep at night I would often lay in bed and stare at the ceiling wondering if this was going to be my lot in life.  Accommodations had been made in my home that would allow me to function, and as the spring moved into the summer and summer to fall, it became more feasible for me to spend more and more time alone.

And then one night, early in the spring while lying awake something in my mind clicked.  Something that my therapists from the NIH on tried to teach me, but had yet to be processed correctly in my mind.  Laying there in the stillness of the night, I decided that I would simply try to do my range of motion exercises.  I was awake anyway, I might as well make the most of my time. I started by trying to move my toes: up, down, up, down, ten times.  I would then try to move my ankle: up down, up down, ten times.  Then bend my knee, ten times, then my hip.  I started with my right leg and worked all the way up to my fingers and neck, and then back down the left side of my body.

At each of my inpatient stops up to this point, as various therapists had instructed me to move particular muscles in my body, if a muscle refused to move to my expectation, I had allowed my mind to recruit whatever muscles it could in an attempt to make the muscles that wouldn’t move function.  This often meant that when trying to move my leg during a PT treatment I would move my arms, strain my neck, and flex whatever else I could try to get some part of my lower extremities to move.  But there laying in the bed, I focused.  I would not allow any other muscles to move except the ones I was trying to flex.  There in the middle of the night I worked up one side of my body and back down the other, working each muscle as independently as I could.  And then… I felt something I had never felt before.  Fatigue.  My toes were tired.  I hadn’t seen them move.  In fact, they hadn’t moved, but the muscles that controlled them had definitely fired.  And they were tired.  They were weak.  They were atrophied.  But they were receiving signals.

Ever the Auburn fan, I didn’t tell anyone at first.  I didn’t want to mojo myself.  I didn’t want to get anyone’s hopes up, especially my own.  And so for weeks I would wake up in the middle of the night, and slowly flex one muscle at a time.  Fatiguing my toes, my ankles, my knees, my hips.

And then one night, while Jodi was putting my big sleeping boots on my feet, I showed her.  My toe was moving, and I was making it happen.  It had started out small, but over time the movement became bigger and bigger.  Then one day while dangling from my Hoyer lift between the bed and wheelchair I swung my leg and back and forth.  Cindy saw it and asked how long I had been doing that.  I told her, “just today.”

For whoever has despised the day of small things shall rejoice…

Zechariah 4:10a (ESV)

As the temple in Jerusalem was being rebuilt, the people of Israel remembered the glory of Solomon’s temple before they were carted off into captivity.  The temple that was being rebuilt was quite modest in comparison, and this was a bit discouraging.  God’s word came to Zechariah as an encouragement for the people.  God was watching.  He was restoring all things.  Though the beginning was small, it ought not be despised because God was at work.

The initial movements of my toes were tiny.  You couldn’t even see them bend or flex.  But God was at work.  And he continues to be at work.  I would be lying to you if I told you that I had all the faith in the world that God would restore my locomotion back then, and I would be lying if I told you that I had all the faith in the world today that He would continue to provide. Truth be told, I am often frustrated and discouraged.  But in those moments, I do everything I can to refocus my mind on how far God has brought me, and although I have no idea how far He will take me, I am thankful for what he has done to this point.

I have no doubt that God doesn’t always run on your timeline.  I have no doubt that at times you can find yourself discouraged and frustrated you aren’t where you thought or wished you would be.  In those moments I want to remind you to not despise the small beginnings.  God is at work, even when you don’t see the toes moving.

In February of 2022, one year after my first trip to the NIH, I would pass another milestone.  I would preach again.  As I wheeled myself in front of the stage I uttered once again the words I never thought would come out of my mouth, “Good morning, my name is Jeremy, and I’m the pastor here…” God was just getting started.