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...
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.