They Sustained My Soul

Today is the final day of my US trip, built around two author conferences. I love engaging with writers and experts from around the world, learning from their successes and struggles. Beyond the book chat, you also hear familiar phrases “I am looking forward to my own bed” or “I enjoy being away, but I really miss my routine”.

Perhaps you can hear your own version of those words.

It is understandable to miss our creature comforts. To yearn for the warmth of our home space.

I know I am.

Getting back to my family was powerful motivation, following a spinal cord injury that threatened my ability to walk. When I got home - 52 days later - it still wasn’t smooth sailing. For months, every day was exhausting. Every action a negotiation with pain.

To the extent possible, I resume doing activities I enjoy. But they are distinctly different from life before injury. Lucy and I still go out in the evening, albeit rarely - fatigue and pain mean I need a very strong reason. Our dominant evening routine becomes watching series after series of English crime dramas, a genre we both love (especially BBC productions).

It’s a typical night about four months after my injury, once dinner was done and our dogs are fed.

I set up the spot I want to sit on our lounge, positioning a storage box. My legs are aching with fatigue and pulsing – think of the most intense pins and needles you have experienced. My body is unable to pump fluids around like before, so by each evening I have swollen feet and a one inch band of swelling above the ankles – almost like a set of strap-on ankle weights. Putting my feet up alleviates my discomfort.

I sit, legs extended, shuffling back and forth to find the “right” placement for my bottom. The 23cm rods that stabilise my spine constrain flexibility and cause intense pain in my back below that fixation. I find the angle where that is minimized.

I adjust every few minutes – shifting the pain points slightly. After 15 minutes or so, I gingerly roll down onto my side, propping a cushion under my head and tucking my legs – almost like a fetal position. Even then the pain builds up, overwhelms me. I struggle to my feet, pushing off the sofa armrest with my arm to generate the strength to stand. I walk to our kitchen bench, then use it to lower myself onto our wooden floorboards. I crawl onto my Pilates mat on the floor and lay full on my back, fully stretched out with my head on the side to see the TV.

When the show ends, I tense my muscles and prepare for the strain and sharp pain as I roll to my side. With one hand on the floor and driving the floor-side shoulder into the ground as hard as I can I slowly push myself up and onto all fours. I gingerly crawl across the hard wooden floors to the lounge, our floorboards unforgiving on my knees. I put both hands on the armrest to drag myself back up to standing.

Harvard Professor Dr Ellen Langer spent decades researching the power of mindset on our physical limits. She says:

"It is not our physical state that limits us — it is our mindset about our own limits, our perceptions, that draws the lines in the sand."

Those moments when I decided to connect to things I associated with my “normality” – my typical pre-injury days - helped me persevere, to push my limits. They were the reason I was putting in the work, to make life a little better in a week, or a month, or a year. Believing things could improve, and I could still find joy today.

The little decisions. The little actions. The little grunts of determination.

They were the moments that sustained my soul.

PS. I encountered Dr Ellen Langer's work through a BBC recreation of her counterclockwise study, in which six British celebrities aged between 76 and 88 lived for a week as they had 35 years earlier, in 1975. Memory, mood, flexibility and stamina improved in almost all of them. One participant, who always walked with two sticks and often relied on a wheelchair, walked 148 steps with just one stick halfway through the week. She was, the researchers noted, no longer willing to be limited by the physical constraints she had imposed on herself.