Chapter 5: Own your (SCI) Journey
This discussion + podcast is the fifth of a 10-part series that accompanies our book on SCI recovery, From the Ground Up: A Human-Powered Framework for Spinal Cord Injury Recovery. It will introduce the uninitiated reader to topics discussed in Chapter 5 of the book, but some vocabulary or context may not be fully defined.
Paralysis comes with a loss of power to do what you want, how you want, and when you want. Even if you are active in making decisions, you may not get the opportunity to actually make *it* happen, which can end up feeling like your life is being lived for you. This passive participation is one of the largest psychological challenges of SCI recovery and, for many, it is a driving force toward achieving independence.
For those who have not experienced paralysis, pause for a moment to imagine the implications from the perspective of an athlete who has limited use of his arms and must rely on a caretaker for basic needs:
One week I am living my life, making my own decisions, and the next week I feel as though I am no longer needed in my own life. In the hospital, all decisions are made for me. At home, everything is done for me. I eat and drink using someone else’s hands to hold utensils. I am physically moved from place to place by a caretaker instead of moving myself. Medical professionals have declared what I can and cannot expect for the future, and everywhere I go people ask my caretaker in a soft tone if I need anything. Why don’t they ask me? Am I no longer needed here?
This loss of independence would be a huge shock for anyone, and it’s important to register when we feel this powerlessness. By acknowledging this reaction when it happens, we can address specific triggers and gauge progress as it improves.
Trainers should always consider ways to structure exercises to encourage athlete autonomy. It builds confidence, and they will learn faster, too!
Explore these concepts in greater detail in our book, From the Ground Up: A Human-Powered Framework for Spinal Cord Injury Recovery, available in print & e-book format.
Reliance on People, Things & Situations
Right after spinal cord injury, the degree of dependence on outside systems is at an all-time high. They are designed and often required, to keep us alive. As our condition stabilizes, we may continue to rely on these supports, out of habit or ease, even if we no longer truly need them. Without consciously assessing how we rely on people, things, and situations, we risk entering a vicious cycle of dependence that deprives us of responsibility and independence.
The goal of this chapter is to identify ways in which we are stuck in this cycle, so we can begin to reclaim control. We encourage you to reflect on your own (or your client’s) reliance on each category.
Some examples of reliance, and potential areas to gain independence (and freedom from) after spinal cord injury include:
Help on the basics, like washing, dressing, eating, cooking and cleaning.
Trusting others to advise in your individual interest, or following a general protocol.
Relying on trainers for routine movement.
Reclining a seat to avoid falling forward.
Spasm medication.
Requiring padded seats at restaurants.
Needing warm water to swim, and not being able to handle the cold.
Let's break each of these down...
Relying on people: Help on the basics, like washing, dressing, eating, cooking and cleaning. This is the most commonly cited form of dependence, and for many it is daunting to think about running a household without help. One essential part of incrementally reclaiming these responsibilities is accepting that tasks will take longer as you figure out how to do them on your own. Treat folding clothes (even if you complete just one item) as an exercise in arm, wrist, and finger coordination and pay close attention to where exactly the motion is difficult. This will help you find a different way or know what strength to work on. Just as in a workout, you need to enter the Goldilocks Zone of struggle to learn.
Relying on people/services: Trusting others to advise in your individual interest, or following a general protocol. Recommendations from professionals on what you need are one thing, but routine assistance for the same job prevents you from learning to fix it yourself. This is common in wheelchair adjustments, where the technician makes an educated guess about the proper backrest height or angle of seat “dump,” but it’s up to the athlete to analyze whether or not the changes are the right fit. The easiest way to take ownership of this is to investigate your specific needs and speak up about them.
Alina experiments with movements on the floor, in the process learning how to move in novel ways without dependents on props or people.
Relying on people/services: Using physical therapy session time to complete routine movement. Maximize your time with those who have movement expertise by focusing on kinesthetic learning/coaching and challenging exercises while you satisfy basic ‘maintenance’ at home. This includes stretching shoulders and hips and using massage tools to hydrate tissues.
Relying on a thing: Reclining a seat to avoid falling forward. This strategy works really well, but it does not address the underlying postural problem of weak trunk muscles. Reclining is a temporary fix while you should concurrently work on strengthening areas to self-support this posture. Think about other external supports you need to stay upright in other contexts, like propping on an elbow while typing, or holding onto a steering wheel to lean and reach. Awareness is the first step to better exercise programming and reclaiming your internal strength for yourself.
Relying on a thing: Spasm medication. Some athletes with severe spasticity take muscle suppressants with side effects such as decreased nerve conduction and short-term memory loss. While medications are sometimes necessary to be functional, it’s important to discuss with your doctor about supplementing or replacing medications with more nervous system healing movement. Move in the direction of managing symptoms as naturally as possible.
Relying on a situation: Requiring padded seats at restaurants. For those who like to get out of the wheelchair at work or at a restaurant, you may be deterred due to a lack of seat cushion. Perhaps you have a fear of skin damage, or it’s simply uncomfortable. Carry a small pad with you (such as a cut-up yoga mat or Purple cushion) or whatever else you need to be comfortable in new seats.
Relying on a situation: Needing warm water to swim, and not being able to handle the cold. What if there was a way to do some vigorous exercise for a few minutes before getting in the water so that the internal body temperature was less susceptible to the cold water? This is what able-bodied folks do, and it’s not out of the question to pump our arms to get the blood flowing more vigorously.
Casey collapses and loads his wheelchair into the car. This small exercise of self-reliance often has a large effect psychologically on an athlete’s sense of freedom.
Now it’s time for you, if you desire more autonomy, to consider for yourself: in what ways are you currently dependent on people, things, and situations?
How can you begin to reclaim some of those responsibilities today?
Chapter / Episode 5 topics include:
How to develop ownership in both domains: 1. recovery & 2. lifestyle after spinal cord injury
Why there is no path around developing a movement program at home – life happens away from the rehab gym
How to question assumptions you have made about your dependency on people, things, and situations after SCI
Trainers must assign movement “homework” if their clients truly want to improve
Why you must shoulder the blame for the failures if you want to take credit for successes!
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