Creativity
What we have learned, what has changed, and the roads we have helped pave in the nearly 22 years since my son Alex was injured.
On November 14, 2004, Alex was critically injured in a car accident. He was just 6½ years old. My other three children were 4 years old, 2 years old, and just 3 days old.
That youngest one? He’s the little voice you hear in this video asking to see. He wanted to watch what we were doing with his big brother. ❤️
When Alex was injured, social media as we know it today didn’t exist. Information about injuries as severe and unusual as his was incredibly difficult to find.
Alex sustained a traumatic injury at the cervicomedullary junction, where the brainstem transitions into the spinal cord, along with devastating brain injuries.
His injuries were so severe that even the medical team had little to offer us in the way of examples, resources, or possibilities.
Christopher Reeve had died just one month earlier. The medical team actually asked whether we knew who he was.
Their reason?
To explain that Alex’s injuries were worse.
Hope was not something we were offered.
And when Alex began making progress, those improvements were often downplayed. We were reminded of the images and the severity of his injuries.
That approach taught me a great deal.
But the story didn’t end there.
Fast-forward…
Alex woke up from a seven-week coma.
He came home.
We endured several incredibly difficult months…actually years.
And then something began to change.
We turned a corner, and Alex began making remarkable progress.
Along the way, I connected with people who believed in working toward recovery. People who were willing to explore possibilities rather than simply accept limitations.
I began learning about neuroplasticity, repetitive patterned movement, and locomotor training.
The idea that repeated, meaningful movement and sensory input might help stimulate and engage the nervous system fascinated me.
But there was a problem.
Actually, several.
At that time, getting Alex accepted into an established spinal cord injury rehabilitation program was extremely difficult because of the extraordinary height of his injury—above C1, at the cervicomedullary junction.
Add to that the limitations of state insurance coverage across state lines, and our options became even smaller.
So…
We got creative! 😁
Our dear friend Wendy, who is also a physical therapist, came up with an idea.
A deer stand harness.
A Hoyer lift.
A treadmill.
And a whole lot of determination!
We used the harness and Hoyer lift to support Alex over the treadmill.
I held and supported his head.
Wendy moved his legs and feet through a walking pattern as the treadmill moved beneath him.
We even suspended his arms!
And you know what?
Alex had FUN!
He was moving his arms through movements generated at his shoulders. His feet were receiving rhythmic contact and pressure from the treadmill.
We were providing patterned movement and sensory input while giving Alex an opportunity to participate in something new.
Was it conventional?
Absolutely not! 🤭
Was it a carefully improvised approach that we developed together?
You bet!
And we kept doing it until Alex eventually outgrew the Hoyer lift.
I look back at videos like this and smile.
Not simply because of what we were doing, but because of how we were thinking.
We weren’t waiting for someone to hand us a roadmap.
We were learning, asking questions, finding knowledgeable people, problem-solving, and creating opportunities.
And Alex was right there in the middle of it all, enjoying himself.
Nearly 22 years later, that philosophy hasn’t changed.
We’ve learned an extraordinary amount about the nervous system, rehabilitation, respiratory support, and the incredible complexity of Alex’s injuries.
We’ve also learned that sometimes the greatest limitations aren’t found in the person with the injury.
They’re found in the boundaries of what others are willing to explore.
Being creative has been a huge part of our journey.
One idea. One opportunity. One little step at a time.
Sometimes, when there isn’t a road, you have to help pave one.
The Goal Is Life. ❤️
⸻
🧠 NERD NOTE: The Cervicomedullary Junction
The cervicomedullary junction (CMJ) is the critical anatomical transition where the medulla oblongata, the lowest portion of the brainstem, becomes the upper cervical spinal cord.
This small region is extraordinarily important because it contains or connects pathways involved in:
• Breathing and respiratory regulation
• Heart rate and blood pressure control
• Communication between the brain and body
• Voluntary movement and sensation
• Essential autonomic functions
Alex’s traumatic injury involved this junction and the uppermost cervical spinal cord, making his neurological injury particularly complex.
An injury at this level is not simply a high cervical spinal cord injury. It can also affect the brainstem-related systems responsible for regulating essential functions.
And that is part of what makes Alex’s story, his recovery efforts, and everything we have learned along the way so remarkable.
One important distinction: Repetitive patterned movement and locomotor training can provide sensory input and opportunities for task-specific rehabilitation, but they do not guarantee neurological recovery. This video documents one of the creative approaches we explored with Alex.
#TheGoalIsLife #PavingNewRoads #SpinalCordInjury #SpinalCordInjuryRecovery #Neuroplasticity #LocomotorTraining #PhysicalTherapy #CervicomedullaryJunction #Rehabilitation #ButGod
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