The issue for me was navigating the fine line that separated motivation from delusion.
It was going to happen, I thought, everything else would have to wait. It would be impossible to overstate how certain I was in my recovery — a certainty that evolved into an all consuming sentiment that forced me to put the rest of life on hold.
To understand the contributing factors behind what became an unhealthy, life-altering obsession with regaining function, you’ll have to learn a bit about me. When I was 14 I nearly died. An undiagnosed illness, something similar to transverse myelitis or ADEM caused severe swelling in and along my brain and spinal cord, ultimately resulting in a complete quadriplegia. Doctors called me an enigma, and when the dust settled and I started recovering, they weren’t shy about how encouraged they were by my potential.
I saw continuous gains throughout six weeks in the ICU, eight tumultuous months in rehab, even the first year back at home. The wiggle of a finger, the flex of a biceps grew until I’d recovered relatively significant function of my arms. I could use the bathroom without those pesky catheters, I even started spending hours off the ventilator I required to breathe. Everything was going according to plan. I was broken but I was being put back together. Why would I bother seeing friends or going back to school? The ugly body I inhabited was temporary, the old me would be back soon.
Then, as so many of us do, I plateaued.
Roughly two years after I fell ill my recovery stopped, and I regressed a bit. Physical and occupational therapy became an exercise in maintenance rather than striving for goals. All in all I’d gained enough function to perform basic daily living tasks. I could even stand up — just not long enough to gain any real independence. Most importantly, most unfortunately, I couldn’t breathe quite well enough to get off the ventilator permanently.
This isn’t a sob story. My condition may be unique. but my experience is simply an emphasized version of what happens to many who have a spinal cord injury. The issue for me was navigating the fine line that separated motivation from delusion.
I went on to spend my teen years in relative seclusion, waiting to get better despite mounting evidence that it wasn’t going to happen. I made the mistake of thinking I was special. After all, my illness was so unprecedented that nobody could give me a definitive prognosis.
Then came one boring summer night when, after too many monotonous years toiling in the status quo, something clicked. I don’t know how or why, but I decided it was OK if I didn’t recover. If it happened, great, but if it didn’t I was still going to live. It was by no means a smooth process, but I went on to get my GED and went to school. I started working, started writing, and embraced just about all the less appropriate activities 20-somethings frequently partake in.
In the age of social media I’m often exposed to people with new SCIs. I’ll see posts about progress, from simple spasms to retaking those first steps. It never fails to bring a smile to my face but it also makes me eager to share my story.
Now I’m no better, my experiences and opinions no more valid than anyone else with a spinal cord injury, but if I were given the opportunity to speak to the newly disabled, especially the young among them, I’d tell them not to be like me.
Being obsessed with your recovery isn’t a bad thing, you’ll need that motivation to power through the tough days. Just don’t get lost. I got lost, and missed a decade of experiences in the process.