Here is the fourth part of an exert from an interview with a good friend of ours who lives with a SCI. These are his unedited words and Pete pulls no punches, this is based on his experience and opinion. If you are easily offended by the use of strong language best to not continue reading, don't say you haven't been warned...
Interviewer: Can
you explain how transitioning into a wheelchair affected you psychologically?
Pete: There’s a lot
to reflect on since I became a wheelchair user. It’s very difficult to have an
outside perspective on yourself in real time; it’s only when you look back from
a few years down the line that you understand more fully what was happening and
why.
Talking in the broadest terms, spinal
cord injuries, whether traumatic or non-traumatic, affect people differently according
to their age. A more mature person might have a philosophical view on things,
whereas someone in their teenage years might be more emotionally outward. The
balance of hormones against experience, perhaps.
I was eighteen when I got a chair. I’m
not sure it’s something anyone ever gets completely used to, simply because
it’s never simple and it’s never easy. I also experienced the unusual situation
of having a double-dip transition, where I first became a paraplegic, then,
latterly, a quadriplegic. The paraplegia I saw coming from way off. The
quadriplegic development happened more abruptly because it occurred from the
second part of my spinal fusion operation. My reactions to when I first started
using a chair, and when I became more quadriplegic, were very different, partly
because the ramifications of paraplegia and quadriplegia are worlds apart.
The preamble to me using a wheelchair
can be bracketed between when the symptoms became noticeable, which was 3
months after I turned 16, and when I first sat in a wheelchair about 29 months
later. During this period, I underwent 5 major operations and 2 episodes of
spinal meningitis. The yo-yoing stress of having the timeline of my
deteriorating gait punctuated by surgical intervention and post-op
rehabilitation was heavy. I was becoming outcast from the world of the walking,
and it was impossible to express my inner turmoil directly. When I settled into
using a wheelchair, it was a relief - It was a new dimension in which I could
progress. I used to challenge myself to get across the bed, into the armchair,
then into another chair, and back. I got a lot of satisfaction from working these
new furrows.
I
may not always have been as adventurous as I could’ve been, but I was never
intimidated by a physical challenge. What I was shit at was not confronting the
other issues like urinary incontinence and my posture. As I mentioned in the
seminar, because I took the scenic route to becoming a wheelchair user, I
wasn’t assigned to a spinal injuries unit for proper rehab. And even if I was,
I would’ve been difficult towards the staff over certain issues. When an
able-bodied medical professional gives you a 40 cm catheter and tells you to
slide the majority of it up your urethra, the words ‘get fucked’ trip off your
tongue of their own free will.
In school, we’re prepared for puberty,
having safe sex, chasing a career. No one prepares you for becoming disabled.
The experience is isolating in a way the newly disabled probably aren’t
equipped to convey - more so if you’re younger; there’s more to mourn. But as a
paraplegic, I had enough to fight back with. I worked out how to go to the
toilet, how to get dressed in the chair, how to get up and down curbs. I had a
car with hand controls so I could drive. I learned to swim again and some days
I would swim for a mile, which took about an hour. I got myself a girlfriend
after 18 months of being in a chair, then dumped her to go out with another
girl who lived in British Columbia, and a lot of travelling ensued, and yet I
was still too much of a coward to catheterise.
My kyphoscoliosis getting worse wasn’t
something I could ignore so easily. It was so pronounced that some nights I got
inwardly distressed because I could feel myself choking on my own collar bones.
I liaised with my orthopaedic surgeon and he felt it was time to intervene. He gave
me the choice to have my spine fixed in the position it was in with a single
operation, or to have it straightened in a two-stage op. I took the latter and
that’s when my quadriplegia became more pronounced. This happened because the
scar tissue and syringomyelia in my spinal canal became displaced during the
second op when they straightened and fused my spine.
Neurologically speaking, I’d gone into
the operating theatre as a C7 and come out a C4/5. Specifically, I had good
deltoids and biceps (90% left, 100% right), about 10% triceps function, some
wrist extension, very little finger extension and almost zero flexion. However,
I wasn’t upset. My upper trapezius muscles felt like a huge weight had been
lifted from them, which it had (I have a large head), and uncoiling my spine
let my muscles settle into where they’re supposed to be. It was like I’d had
the best massage in the universe. And whereas newly made quadriplegics find
they’ve suddenly lost an awful lot in terms of their ability and their future, I
knew that I’d been improved and stabilised somewhat also. When the physios
first took me to the bathroom after the final op so I could see myself in the
mirror, my body was so atrophied, and my neck was so much more upright that I
looked like ET. I’d grown 3 inches in height during that second operation.
What SCI patients typically don’t
realise, though, is how hard life really is until they leave hospital. Returning
home is when you begin to understand what you’ve become in comparison to the
person you can no longer be. Understandably, perhaps, the avalanche of upset was
heavier when I became categorically quadriplegic.
I don’t think I can cover the full
emotional spectrum of how both stages (paraplegia and quadriplegia) affected
me. What I will say though, is that becoming a quadriplegic as a young man is a
more profound emasculation. Everything that defines us as young men is either
severely reduced or completely removed from your sphere of ability. Confidence,
energy, the sense of power and capability that we naturally fostered through
strength (particularly in our hands), typically doing things like lifting
weights, cycling, martial arts, giving a firm handshake, or just standing to
meet someone on first introduction. It goes beyond raw power. Not being able to
hold a pen, shave, brush your teeth without using two hands, all these things
affect your fundamental confidence.
Aside from strength and creativity, no
longer being able to interact physically with someone sexually is another
factor. The way in which erectile dysfunction manifests varies according to
which level of your spinal-cord is damaged. It’s apparently more common in
paraplegics to not be able to get an erection, even with anti-impotency drugs. I
had a paraplegic friend in rehab who was immune to Viagra and its oral
derivatives. For quadriplegics, the challenge is (according to the consensus)
reaching a climax. However, it’s not just the obvious acts of sexual
expression, it’s also the simple things like being able to touch and feel with
your hands, or basic body language you’d use to flirt – All aspects of physical
expression.
In these respects, there’s a huge
amount to take on board in terms of, firstly, who you will no longer be, and
secondly, who you are expected to become. Wheelchairs are for the old and
infirm. No young man wants to be either of those things. Incontinence issues,
having to use the lift instead of the stairs, needing special access routes and
ramps - these are all things you wouldn’t expect to worry about until you’d
lived a good 85 years of active life. This complex psychology is hidden behind
the apparently normal facial features of someone who’s sat in a wheelchair but possibly
otherwise young and healthy. The truth is, the newly disabled aren’t simply
abbreviated versions of their former selves, they’re fighting for their lives
and they can’t express it because the situation is so alien to them, as well as
everyone who’s emotionally close to them.
From my own experience, and what I have
learnt from those on the Spinal Injuries Unit at Stanmore (as well as from other
wheelchair rugby players), going out in public is difficult in the early
stages. I can remember fairly clearly the feeling that everyone was looking at
me. However, I also felt a certain edge of desperation and recklessness that forced
me to persevere. What happens with more progressive SCI patients is a swing
from crippling self-consciousness, to virtual indifference to the opinions of strangers.
The amount of time that takes varies. Those who never ventured beyond their
comfort zone obviously don’t develop a great deal of self-confidence. Those who
have the boldness to explore more of the world and shit themselves in exotic
locations inevitably gain more character.
One thing that is possibly universal is
the initial heartbreak which is followed by various forms of anger. This anger
has a tendency to sharpen the mind in certain aspects and develops a
long-standing neural pathway to that angriness. That is not to say that people
remain angry at their misfortune, rather it is to say that they maintain a
particular hard edge throughout life (unless, of course, they experience a
miraculous recovery). Part of the reason for this hard edge is the underlying
effect of anxiety. Not being in control of 85% of your body gives you a lot to
be anxious about. Continual harassment by spasm, the pain of stiff joints and
tight muscles, and particularly the risk of bodily malfunctions (incontinence
being the worst) which is amplified in public. Imagine, if you will, not just
living the stigma of being in a wheelchair, but also having the capacity to
perform a remarkable, spontaneous impersonation of a human skunk with little
warning. I think this is something every SCI patient goes through. On the plus
side, the more you go through it, the better you get at managing it and the
less you let it degrade you if it does happen. Unfortunately, the process of
rectifying a back-end malfunction is always going to be fairly exhausting and
costly in terms of time. My main point, though, is that in the early stages of
being a wheelchair user, this particular aspect is a hammer blow to the
self-confidence. No one tells the school careers officer they want to be a disabled
skunk when they grow up.
Urinary incontinence is another
significant factor for some, though it’s always been fairly straightforward for
me in terms of management once I bit the bullet and inserted that catheter. It
bled each time I catheterised for the first few months; I even made my brother
faint on one occasion when he tried to take note of how it was done. Obviously,
this is a point of pride for me. Slightly hit-and-miss as a party trick.
Some SCI patients have leaky bladders
and struggle to avoid it. For the majority, urine retention is the main
problem, and that can trigger not just autonomic dysreflexia, but also reflux
up to the kidneys causing damage long term.
This general complication alone isn’t a
factor that will stop someone going out in public in their wheelchair, it just
adds another straw to the haystack of anxiety on the camel’s back. Where will I
be able to urinate? Will I be able to get there at the right time? If I don’t,
will my head start banging from autonomic dysreflexia? Will I have a stroke
from it, or another UTI because I was so desperate to piss that I compromised
on hygiene? I’m sure you see my point.
Problems with pressure wounds
complicate things further in terms of spasm; sleep; what you can wear; how you
wash et cetera. Everything I’ve just mentioned is just an outline of what goes
on in the heads of the newly disabled, and perhaps partially explains why it’s
difficult to get someone to leave their comfort zone. Some patients won’t like
using a standing frame because it messes with their blood pressure, or because
they’re obstinate twats who won’t ask for help a second time. Sooner or later
though, a patient has to accept that time marches on, it’s taking everyone with
it, and you can either go willingly or noisily.
The notion that you are alone with your
disability becomes a quieter voice over time, but it’s persistent; your own threnodic
tinnitus. It resonates with all sorts of other feelings, such as pain,
depression, or the heartache of a breakup. No one has the cure, the only
therapy is to keep going, to try and outrun the shadow, because if you wallow,
you’ll get caught in the eclipse.
There’s a hidden fortune in the
misfortune. An able-bodied man can hide from his obligations. When you’re a
wheelchair user, obstacles
square up to you; they’re tangible and undeniable, aggressive. If you don’t get
out of bed, you’ll get pressure wounds. If you don’t catheterise, you’ll get
AD. If you don’t take laxatives and eat the right food and enough water, you’ll
get constipated. If you don’t exercise, you’re in for a world of problems. And
if you don’t shower, you’ll never get laid.
