Chapter 2: Every Body is Different
This discussion + podcast is the second 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 2 of the book, but some vocabulary or context may not be fully defined.
There is a lot of confusion in the recently-injured SCI community around the words diagnosis and prognosis. A diagnosis, such as “C5 ASIA B,” is a medical statement describing a condition at a single time. A prognosis, on the other hand, is a projection into the future for how such a diagnosis might evolve.
This is where it gets very tricky for folks with a spinal cord injury because the recovery paths that start at the same diagnosis can end up in dramatically different places. This is to say that the idea of a prognosis after a paralyzing spinal cord injury doesn’t really mean anything – for what good is such a projection into the future if it is possibly totally wrong?
Recovery after spinal cord injury depends on many factors, such as:
Severity of injury to the spinal cord itself
The location along the cord
Delay after injury before the area was surgically stabilized
Specific procedures performed during spinal stabilization surgery
Amount, quality, and rate of rehabilitative movements
The overall level of activity in daily life outside of “rehab” sessions
Stress levels, amount of sleep, nutritional intake, and other lifestyle factors
…and so many more!
Most of these factors aren’t even well-defined – what makes for “quality” rehab, anyway? How can you quantify the degree of damage to the cord? – so hopefully it is clear that trying to assign a prognosis based on limited and short-term information after injury is a doomed effort. The real risk here, too, is that the psychological state of the individual has a huge influence on their recovery path. We all know this intuitively, and so it is critical that we bear this in mind as an SCI community when considering the diagnoses we hear in the hospital. It is easy to assume a prognosis based on anecdotal evidence, what we hear from doctors, or what is available online.
What does an ASIA score for spinal cord injury diagnosis mean?
This methodology from the American Spinal Injury Association (ASIA) is meant to communicate a level of impairment based on various sensory and movement factors, but that is all. It says nothing about how these abilities might change over time, or how an individual’s life will be impacted in the future. That’s why we give special attention in Chapter 2 to understanding the limits of this scale – and to avoid precluding ourselves from possible positive outcomes!
The ASIA Scale predicts future livelihood, about as well as a multiple choice exam predicts life success: the results are not meaningless, but they should not be considered a guarantee for what the future holds.
Explore these concepts in greater detail in our book, From the Ground Up: a Human-Powered Framewrok for Spinal Cord Injury Recovery, available in print & e-book format.
Psychological impacts & loss of automatic bodily function after SCI
Much attention has been given to the sense of loss around the inability to walk or to live independently, but not as much has been written about other impacts on lifestyle. Other than the loss of movement/paralysis, other impacts of SCI include:
Sensation impairment
Chronic pain
Circulation difficulty with reduced muscle firing
Blood pressure management
Bowel and bladder control
Temperature regulation
Athletes often feel as if they are at the mercy of unpredictable bodily processes, which can cause huge disruptions in the day-to-day schedule.
Some of these can impact someone’s life more than loss of movement, so they are essential in considering how someone’s sense of self might be affected by their injury. After SCI, folks often feel as if they have lost control over more than just moving their body – it is as if their very identity as a human with a body has come into question.
While unfortunately, these challenges don’t have clear resolutions, hopefully, family members, friends, and caregivers can understand more of the individual’s experience by considering these effects.
Chapter / Episode 2 topics include:
Crafting an environment for nervous system healing after spinal cord injury
Compensation patterns & movement origins
“Kinesthetic understanding” and its importance in SCI rehab
Why ownership is essential for long-term recovery from spinal cord injury
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