Movement recovery after spinal cord injury with Theo St. Francis.
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The Continuum

8/31/2014

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"…actually, this Sunday is my one year."
"Oh, wow. How are you feeling about it?"
“I feel great! 

…I mean, I’m pretty happy with where I am.”

I was speaking with one of the other clients who also works out at SCI-FIT – the gym in Pleasanton, CA where I spend most of my therapy time – about the upcoming weekend. This friend, who was injured a year before I was and who is a source of guidance for me, was a bit surprised by my quick response, which I noticed and immediately thought to myself, ‘Am I missing something?’

These quick, blurted-out responses to questions about more delicate issues, I find, are glimpses into my subconscious––how do I actually feel, beyond what I tell myself in order to get through the day, and beyond what I hear from those around me (which is all but completely ignored when it comes to comments relating to a “prognosis”). In this case, the message was a rush of confidence that I feel about how I am approaching recovery, and, consequently, how I am progressing. 

August 24th marked the 12 month anniversary of when a lot of things in my life changed, and in such a way as to hold a strong sense of permanence. (Note that 'a lot of things’ does not equal ‘everything’, and that ‘sense of permanence’ does not mean ‘is permanent’.) But consider August 20th also, which marked the anniversary of many other things changing for me: when I arrived on the MIT campus to start a new adventure in my life. (It happened to have been a ridiculously humid day, at least for someone from the we-don’t-have-weather-just-earthquakes Bay Area.)    

What’s the difference between these two dates, and why does one appear to have so much more influence on how I, and others, think about my life’s calendar?

While there is a purpose to reflecting on my physical ability before the injury to remind myself of where my recovery is headed, I do not think it is useful – in fact, I find it detrimental – to think of my life solely as happening on a Before-Injury / After-Injury basis. That would be placing too much emphasis on an event that I am working so hard to prevent from defining me. It would undermine my efforts to integrate what I have learned since the injury into the person I have been becoming for the last 19 years.

I express this from my own experience from when I was in the hospital, at a time when I had no previous context of living in a paralyzed body and all I could do was think about my uncertain future, and my lost past. Whatever is the opposite of Buddhism, of Mindfulness, that is where my mind landed to avoid the insanity. It is convenient, even paradoxically comforting, to get trapped in the mindset of having two disparate lives, named Before and After, who, like estranged brothers, do not communicate. The comfort that kind of reflection provides is hollow, and the escapism is unsustainable if one has any hope of being productive.

So, while there may have been ‘more' of me that was changed by the events on August 24th than by those on August 20th, my point is that by deëmphasizing any emotional significance of the day, and by recognizing that, for all of us, the journey would not be a journey if there were not bumps along the way, so it is with clear reflection that I can tell you, No, I am not missing anything, and I do, indeed, feel strong and optimistic.

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Fast-tracking

8/11/2014

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As Theo has illustrated, the threshold of improvement is not a line, but rather a broad swath. Happily, we have witnessed intermittent punctuation points that show leaps in his body’s functionality. This latest group of new skills over the past month, including the ability to lock out his legs (which continues!) and rotate more fully, is evidence that Theo has the potential to regain mobility with his continued efforts over the next year and beyond. 

Our conviction in the efficacy of his recovery efforts is a gentle but hugely significant paradigm shift. 

I have referenced how beneficial it has been in working with Theo to have had a background in managing architectural projects. Despite this journey’s unexpected nature, I’ve found its stages to roughly follow those of a design/construction project. I now see that in the beginning when we were all in shock, our work had to do with understanding the issues; we learned all we could about spinal cord injuries and how the medical community – doctors, PTs, hospitals, insurance, etc. – worked with the patients. We did this amid the chaos in a world of unknowns, conflicting directives, and completely new protocols.

Once we had a fairly good understanding of the parameters, we began to design a plan for rehabilitation that included both traditional and alternative approaches that we had researched. This was the exploratory phase, when we met with different experts and tested various techniques to see what benefitted Theo the most. We tried several approaches to acupuncture, evaluated options to adapt elements of the local gym, experimented with numerous breathing techniques and worked to devise a weekly schedule of the most efficient and comprehensive healing activities. Theo copiously tracked the specifics and our combined observations led us to fine-tune the plan, weeding out those that took too much time for the payoff. 

Knowing full well that each stage incorporates elements of former stages – we will always be researching other therapies and optimizing the routine – the regimen we have in place has clearly shown results and therefore we are transitioning from the investigative-design-testing stages to the execution-of-what-works stage.

This is a building’s construction phase, during which the project team follows the specified plan, making adjustments along the way while maintaining focus on the goal of completion. Similarly, we have a plan in place for this section of the recovery and the hard work now for Theo, and for his family, is to put in many hours of effort every day to fulfill that vision. The anxieties and uncertainties of the research and design phases have largely been replaced by the stresses and excitements of the physically fatiguing and mentally rigorous workouts. While this implementation phase is more of a routine than it has ever been, it is no less demanding…but our project team is committed for the long haul!
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All along this course, your supportive comments have given us encouragement. While the work of the phases shifts, the heartwarming effect of kind wishes remains constant. Our thanks. Susan 
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