English is a funny language. It can take a single word
with a single spelling and make two or more meanings from it. A person with a
spinal cord injury is still living, still breathing, still feeling, yet to many
observing her, she looks like a still life, a disorganized body in a
wheelchair. The title does not merely describe two aspects of a subject that is
subject and object in one, but has the flavor of activism too. Thus Jonathan
Cole, consultant neurophysiologist, encapsulates both narrative experience and
misconstrued social perspective of those with spinal cord injury but also
stretches the understanding of the reader to propose that we look upon all
others without a knee-jerk prejudice as to capabilities, needs, and use of
resources.

Still Lives is a highly
readable book that incorporates valuable and necessary neurophysiological
knowledge about various levels of spinal cord injury with the narratives of
those having to live without sensation and movement in the body. He sought
these accounts by asking twelve people with spinal cord injuries (tetraplegia,
or quadriplegia as it is known in the US) the question of what it is like to
live with such an injury. The responses are various: "Enduring,"
"Exploring," "Experimenting," "Observing,"
"Empowering," and "Continuing", each describing also the
six main sections of the book. Each of these book sections concludes with a
commentary and speculation on the broader issues raised.

Cole is a rare breed of doctor who develops a
phenomenology of the body with his neurophysiological insights. Thus his work
attracts interest from a broad range of readers such as philosophers, cognitive
scientists, neuroscientists, social scientists and activist theorists alike, as
well as the interested layperson. Indeed, his work, like that of Oliver Sacks,
stimulates musings upon what it is to be human, what is necessary for a sense
of self, when elements of the usual criteria of humanhood is removed.

A book review of Still
Lives cannot exclude some account of the levels of spinal cord injury, for
to do so would make it strangely shallow. It would unflesh lives into a mere
husk of book assessment. A book review should encourage or discourage readers.
I want very much to encourage readers to this most excellent book.

Spinal cord injuries impact on the physical body in
many ways. I would have liked to quote Cole on this in length, but must instead
be succinct. Spinal cord injury at any vertebral level impacts on many physical
functions: ‘Some with a C4 level may be able to breathe unaided using the
diaphragm, though he or she (and anyone with a level about T9 or so) will still
have lost chest wall movement and have reduced expansion of the lungs. A C5
lesion will allow some movement of the shoulders and of biceps, allowing elbow
flexion, but no power to straighten the elbow.’ (p.14) ‘The functions of the
cord are reflected in the neurological impairments following damage to it.
These may be divided into movement or motor function, to voluntary muscles as
well as to the breathing system, gut, bladder, and blood vessels, and sensory
function to skin, muscles, and internal organs. Because different sensory and
motor nerves pass in and out at each level and because the cord is the relay of
fibers to and from the brain, the level of injury is crucial.’ (p.14)

Spinal cord injury is not confined to loss of
movement, it affects a whole range of functioning, including the sensory
changes of touch, temperature, pressure, proprioception, and balance problems.
‘Temperature regulation can be a problem in tetraplegics, because they cannot
shiver, sweat, or control blood vessels’ dilation and constriction below their
level.’  (p.15) Physiology must turn on
its heels to become experience. Still
Lives is rich with the experiences of others. We find, for instance, that
of sensory changes, loss of balance is perhaps the most unnerving.

Balance difficulties are shared by all tetraplegics,
which can badly interfere with the use of a wheelchair and thus everyday life.
Depending on the level of lesion, sitting in a wheelchair can be absolutely
precarious. Deborah, having alesion on the cervical vertebrae 5/6, has no control
over her posture. She says,

"The first time in a wheelchair I felt like I was
on a horse with no saddle and no reins. Not to sit in a chair I hook on with my
arms round the back of the pushing handles initially, and I sit straight and
balance as best I can. I am still more stable leaning forward with my arms on a
table. I also wear jeans, to give a little support in the stomach." (p.
129)

Paralysis may
mean deadening of muscular activity, but it can also mean muscles spasm in a
huge response to innocuous stimuli. Ian says,

            "[Spasms] used to
throw me out of bed, or out of the chair, €¦."

"Watching your legs in spasm when you have no
control, like someone else is doing it, whether you try and try or not €“ and I
do try and there is a slight tingle down there at times €“ watching you legs do
that is really peculiar. I recognize them as my legs, but I cannot control
them." (p.83)

Pain is present in roughly 60-65 percent of people
with spinal cord injury, and in 20-26 percent it is severe (p.16). It is pain,
ironically, that sometimes gives such a person a sense of having a body. As one
narrator in the book puts it: ‘The pain €¦ does actually give me a semblance of
my lower half. I don’t like it when it’s nagging away, but it would be very
strange to be without any feeling whatsoever below the level of my lesion. You
could stick a needle into me and I wouldn’t have any idea, but I feel the pain
as being there in the legs.’ (p. 75)

The presence of pain and thus some sense of body at
least situates the body in the world. This is not say that those without body
sensation, and movement, do not experience the bodies phenomenologically; they
do, but as objects needing close scrutiny, for not to do so, risks injury and a
loss of sense of embodiment. The still life must be observed for the life to
still live.

The mind can fill in the absences to a certain degree
and thus permits the person a glimpse of normalcy.

Graham related, "Now I can almost kid myself that
I can feel something when I sit in a chair, even though I know I cannot. It
feels exactly the same sitting in a chair now to before I was injured. It can’t
but it does. My mind tells me so. My mind makes me think I am like you over
there. It learns what is the norm for this body. It tells me there is nothing
wrong, so I feel comfortable and correct. Remember, I have been longer disabled
than abled. In a relatively short time things become a norm. You almost forget
how it was before."

The perceptions of others, however, can limit any
sense of being normal. Many abled do not seem to be able to include the
disabled at a normal, unconscious, level. People pour pity and assess the
injured as one without dreams, without self-esteem; yet with community empathy
and education a better understanding of spinal cord injury and the injured
themselves offers a more substantive understanding and possibility of social
integration of all levels of (dis)abled being.

Still Lives encompasses the
narratives of those at the forefront of disability rights, those so terribly
depressed that they regularly contemplate suicide, to those who let go and
actively seek wild sporting adventures, such as skiing and watersports: people,
like all people, exploring the levels and limits of their strengths and
weaknesses.

Jonathan Cole, in the time-honored tradition of a good
storyteller, takes the reader of this book from the dark and into the light of
possibilities and creative solutions. In this way, he offers us all a new way
to reflect upon what it is to be human.

 

© 2004
Elizabeth McCardell

 

Elizabeth McCardell, PhD,
Independent scholar, Australia.

Categories: Memoirs, General