I wanted to share a very insightful piece of writing I recently came across. I don’t know, Alex McKiernan, the gentleman who wrote it, and hope he won’t mind me sharing it, but it’s something that I felt needed to be shared. While what he writes applies to someone living with a lower level, incomplete injury as opposed to my high level, complete injury, its message is still very relevant.
To Be a Quad by Alex McKiernan
“Spinal Cord Injuries are exceedingly rare but terribly devastating. These injuries cripple 40 out of every 1 million Americans annually, resulting in about 12,000 new patients each year. Roughly 270,000 people are currently living with a spinal cord injury in this country. Based on all of this, I understand how my injury is shocking and terrifying to all of you on the “outside,” but as with everything in life, it’s all a matter of perspective.
Madonna Rehabilitation Hospital is a bubble and so while I may be among the unlucky 0.08% of the U.S. population, I’m also among the most fortunate and functional within that group. Living here for two months has been incredible for my physical recovery, but more importantly, my stay has helped me maintain perspective on my injury and my life.
When I leave here I will be categorized by what I can’t do. This lies in stark contrast to my time inside the Madonna bubble, which has always been keenly focused on what I can do. And what I can do is substantial and significant: I can be independent. Many (most?) people with a spinal cord injury cannot. I consider myself extremely fortunate in this regard.
So, if you have some time, let’s talk perspective — do you know anything about spinal cord injuries? I didn’t.
The spinal cord runs from the brain towards the bum, where it ends above your hips and branches further from there. It carries information to and from your brain as it gathers data about your surroundings so that you can respond and move as necessary. As you travel down the spinal cord, away from the brain, nerves branch out and control successively less important aspects of everyday life.
An injury at any point along the cord impacts your ability to sense and control your body below that point. A “high” injury — in your neck, or cervical spine — may impact everything from breathing and heart rate to walking. A “low” injury (like mine) in your back or hips will have little or no effect on your arms, hands or basic life functions. Injuries can be “complete,” which means there is no sensation or muscle function below the injury, or “incomplete,” where some level of sensation or function exists.
The nerves of the spine are broken into 8 cervical (neck) nerves, 12 thoracic (back) nerves, 5 lumbar (low back) nerves and 5 sacral (hips) nerves. The nerves are numbered in descending order: Cervical 1 (C1) is just below your brain, and C8 is at your shoulders; Thoracic 1 (T1) just below C8, and T12 is just below your belly button.
I am T11 incomplete, which means my function and sensation is impaired below my belly button. My arms, hands and core muscles are unaffected. I am, to some degree, a paraplegic. Someone with a “c-spine” injury (to the cervical spine or neck), is a “tetra-” or “quadriplegic,” and has lost most of the sensation and muscular function in their four limbs and trunk. Incomplete paraplegics and quads have the potential to regain all function and sensation lost, but this is not likely. No doctor one can say which patients will regain function or when. Spinal injuries are, to a large degree, a black box to modern medicine.
So who gets spinal cord injuries? Who is the average patient and what does the injury look like? The most common patient is a white male (81% men!) in his thirties, injured in a vehicle accident. The other three most common mechanisms of injury are falls, violence (mostly gunshots) and sports accidents.
Nearly half of all spinal cord injuries occur in C4, C5, C6 and C7 — roughly from your Adam’s apple to your shoulders.
If you can, sit and read the rest of this in a comfortable chair that is reclined. Prop your body up with pillows so that you expend no effort to remain sitting. Now you have the makings of a day in the life of a C5 incomplete quadriplegic, but only the makings — you and I simply can’t imagine the impact.
As you sit in the chair, you can’t feel much of anything below your shoulders — maybe some vague feelings of pressure on certain parts of your body, but nothing terribly specific. You’ve been rehospitalized since reaching rehab because you had pressure sores on your low back and thighs that you couldn’t feel.
You have no abdominal muscle function meaning that you can’t control your trunk, so instead of pillows in your recliner, your power wheelchair has padded arms that tuck in below your armpits and hold you upright. You get from bed to wheelchair to toilet and back with the help of two people and a lift mounted to the ceiling or on wheels like a cherry-picker for removing engines from cars.
Early on, swelling in your neck pressed on nerves higher up your spine and compromised your ability to breathe. At that time, you didn’t have the muscle coordination to properly move your diaphragm, so you were on a ventilator. Even now, 3 months after your accident, you can’t breathe very deeply, or cough forcefully, which puts you at constant risk for pneumonia — the number one killer of quadriplegics.
Your shoulders slump unless you consciously pull them up to the position everyone else thinks is automatic. C5 is the level that controls your biceps and they began coming back about a month after your accident. But your triceps are controlled by C7, so they are completely overpowered by your hulking biceps and your arms want to bend at the elbow, pulling your hands into your chest. You were given Botox injections in your biceps, which partially paralyzed those muscles and balanced the flexion and extension of your arms. Now you can gesture but at full arm extension the weight of your hand overpowers your shoulders and your arm drifts downward after pointing or reaching.
Right now, you’re freezing cold. The room temperature is 70 degrees, you’re wearing a winter hat, long pants and a sweater and the nurse aides have piled warm blankets on and around you, but still you shiver. Your brain isn’t getting accurate or timely information from your skin about temperature, so for now it has decided that you’re cold — objective temperature measurement be damned. Later you’ll sweat uncontrollably as your brain shifts its perspective.
You haven’t peed of your accord since you left the house for work 3 months ago before being t-boned when you blew that light while reading a text. You are constantly catheterized and your urine collects in a bag hanging below your feet. Here in rehab, no one cares about catheters so you drive around with the bag uncovered, its hue reflecting your current state of hydration. But you know that when you leave you’ll feel embarrassed, so you have a cloth bag that covers the urine bag. Unfortunately, a yellow tube travels conspicuously up your pant leg and that’s harder to conceal. Changing catheters over and over results in regular urinary tract infections, which are annoying at best.
If your catheter isn’t draining, or you need to move your bowels, or you’re sitting on a wrinkle in your bed sheet, you don’t know. You can’t feel it and your brain has no way of consciously alerting you so that you can press the call light and get help moving to the toilet or shifting positions in bed. But at some base level, your body has to correct the situation and let you know, so you suddenly have a splitting headache radiating from the base of your skull over the top of your head. Your vision dims, you sweat and your body throbs. You have a case of Autonomic Dysreflexia and your blood pressure has suddenly spiked to 210 — the only option your body has found to communicate with you during times of “crisis.”
As you type a text message with a knuckle, you miss your hands and fingers. You were never terribly talented or coordinated — no piano lessons or rock climbing in your past — but now you just wish you could properly shake a hand. That most basic of first impressions — if extended to you at all — is no longer your forte because bending your wrist, moving your thumb, and straightening and spreading your fingers is controlled by nerves from C6 through T1 — all below your level of injury. Without good use of your hands and fingers, you can’t prepare food, feed yourself, or even fill a cup with water. This makes you feel terribly vulnerable at times.
Your wrist moves but is floppy, and although you can straighten some fingers, it is very difficult and can’t be maintained. It’s not exactly tiring, it just takes a lot of concentration to hold your hand open and focusing on it comes at the expense of other things you need to do — like breathe. Often, in therapy, they scold you to breathe while exercising. You become light headed and your lips tingle, but you simply can’t push those hands and fingers without suspending all other functions momentarily.
Sexual pleasure seems possible, but different. Strange and unfamiliar at best, often a waste of time. You, like most spinal cord injury patients, are young, single and male so sex takes up an inordinate amount of space in your brain. You’ve been told that a third of incomplete spinal injury patients regain this ability to feel and perform, and you sometimes hope that you’re in that minority. But only sometimes — most of the time you are preoccupied with more pressing matters like drinking, eating, voiding and controlling pain.
The pain is a constant hum held in check by a variety of medications. If you work too hard, you hurt and take more meds. If you lay around too much, you hurt and take more meds. For the most part, the only solution presented to you for controlling pain is medication, so you take more meds.
You know this all sounds terribly depressing, negative and shocking so you don’t talk about it except with your quad friends, and in reality, it doesn’t bother you much. It’s your life and you live it. You don’t dwell on it; you look forward to each new day because, in general, every day is better than the last. Ups and downs of course, but overall, you improve consistently. If not outwardly or physically improved, you’ve seen and felt more in three short months than most people ever will, so you gain mental, emotional and spiritual knowledge that gives you strength and power. You have been forced to simplify your life and have come to appreciate the pared down nature of your priorities. The stress and anxieties of your old life seem so dim and childish, and you have come to love the simplicity of your daily routine.
Early on, you would sometimes lay in bed, pushed to the edge of insanity, unable to move anything below your neck, tortured to the limit of your understanding by the slightest itch on your chin, an itch you physically could not scratch. You have felt vulnerability and helplessness that most people will never understand, but even at those lowest of moments you have connected with family and friends through love and compassion. You have strengthened others through your resolve and been strengthened by their unfailing support.
You love and are loved, and have learned that all else is just icing on a rich, complex, and poorly understood cake.”
Stand Strong!
Scott