I’ve had an SCI for 10 years (C3 incomplete) and I’ve noticed this belief among able-bodied and non-SCI disabled people alike, and it’s incredibly frustrating. Lots of people think SCI means you have an easy disability, which is easily understood and taken seriously. Paraplegics are barely even disabled. All people with SCI should be quiet and let other disabilities have attention because we’ve had all the attention for ages (yes, I have genuinely been silenced in disability support groups because having an SCI meant I was privileged over other disabled people). So here is a very brief overview of how SCI affects the body, because lots of people think paraplegia= barely disabling, that walking post-SCI= not disabled anymore, and most people have no idea what it’s like to have an SCI:
- Paralysis obviously: weakened or absent muscle function below the level of injury. It can be zero movement of any kind, or weakness. Incomplete SCIs are very common, so partial paralysis is common. Personally, all of my paralyzed muscles have some amount of movement and I can walk very abnormally and with mobility aids for short distances. Some of my muscles are 1/5, most are 2/5 or 3/5, and some are 4/5. I didn’t have complete return of motor function anywhere below my injury, but it does happen to some people. For reference, here’s a brief description of strength grading for SCIs: 1/5= flickers of movement (visible twitches or feeling a slight muscle contraction when touching the muscle), 2/5= movement but too weak to move against gravity, 3/5= movement strong enough to move against gravity, 4/5= markedly weak, 5/5= normal strength. If you’ve ever had a broken bone and been in a cast for 6 weeks, the weakness and stiffness you felt immediately when the cast came off is what a 4/5 SCI muscle feels like. Most people have never experienced muscle weakness equivalent to even 3/5 SCI strength.
- Paralysis of trunk and arm/hand muscles: this is poorly understood by many. Trunk paralysis makes balancing extremely difficult. I can’t sit up unsupported, so I need a supportive backrest all the time or I’m leaning on my arms. Quadriplegics can have total paralysis below the neck, or may have some arm movements but not others. Hand paralysis with working arms or only triceps paralysis is common. Any hand-related task is difficult. Triceps paralysis makes pushing a wheelchair difficult. Many disabled people talk about “pushing through,” “borrowing spoons from tomorrow,” “paying for it later,” and similar statements. With paralysis, we simply cannot do that. We cannot go to that place that our wheelchairs can’t go. We cannot get ourselves into that inaccessible car. I can’t count the times where someone has suggested I do something and just plan to rest later.
- Paralysis of the diaphragm and other breathing muscles: common in quads. Paralysis of trunk muscles (specifically those little muscles around your ribs) affects breathing as well. High-level quads (C1-C2) often need ventilators 24/7.
- Spasticity: involuntary contraction of paralyzed muscles. May be general tightness/rigidity, clonus, or other abnormal involuntary movements or posturing. It’s not painful for me, but I’m sure it can be for some. Spastic muscles move with an extreme amount of force. I’ve had a leg spasm and shoot out and hit something hard enough to break bones in my feet. Injuries above T12 typically cause spastic paralysis, while injuries below typically cause flaccid paralysis.
- Loss of sensation: below level of injury. For me, this is impaired but not completely absent sensation below C3 (base of the neck). I don’t always feel pain, so I’ve burned, cut, and bruised myself without realizing. I also have trouble with non-painful sensations, so I might not notice if I’ve bumped or dropped something or if my pants are sliding down or whatever.
- Temperature dysregulation: we’re really prone to heatstroke because we don’t sweat as much. We often feel extremely cold or hot when it’s just slightly cool or warm.
- Circulation problems: low blood pressure (orthostatic or all the time).
- Autonomic dysreflexia: occurs in people with SCIs above T6, due to any sort of below-injury stimulus (bladder full, need to poop, stubbed toe, etc.). Causes various weird autonomic symptoms like sweating, goosebumps, fast heart beat, pounding headache, flushing, and high blood pressure. Can cause extreme high blood pressure leading to strokes and death.
- Skin breakdown: common in SCIs. We have partial or absent sensation in our skin below our injuries. We don’t have that feeling to tell us if we’re sitting in a way that’s pinching something or if we’ve been in the same position for too long and need to adjust. Sitting in one position for too long reduces circulation and makes the skin breakdown, causing pressure sores. This is managed with special cushions, long periods (months, often) of bed rest, specialized wound care, and surgeries. People with SCI often die of pressure sore complications.
- Neurogenic bladder: people with SCI have bladder dysfunction. We almost always use catheters to empty our bladders. Intermittent cathing (inserting a single-use catheter for a few minutes several times a day) is common. Suprapubic catheters (permanent catheters surgically placed in the belly) are also popular. Some people (like me) have a Mitrofanoff channel, which is a surgical procedure to make intermittent cathing easier, where a tube is made to connect the bladder to the belly. Others have a urostomy. These are major surgeries. UTIs are common. It’s not unusual for someone with an SCI to have 10-15+ per year. Infections and kidney damage are common causes of death in SCI. Incontinence is common.
- Neurogenic bowel: people with SCI also have bowel dysfunction. We almost always do a daily/every other day bowel program. This may involve manual evacuation, digital stimulation, rectal suppositories, and/or transanal irrigation or large volume enemas. Some people get a colostomy or other surgical procedures. Incontinence is common.
- Sexual dysfunction: absent or reduced sensation, orgasms, erections, etc. The nerves that control bladder, bowel, and sexual function are all at the very base of the spine, so basically 100% of people with SCI have these issues.
- Osteoporosis: typically below level of injury due to lack of standing/walking, but milder bone weakness also occurs in walking SCIs.
- Chronic fatigue and chronic pain: lots of reasons and presentations in SCI. Positioning issues, weak muscles poorly supporting joints, overuse injuries, and lots of other stuff. All extremely common for us.
- Neuropathic pain: this occurs due to the nerve damage from SCI. Can be mild or extreme and totally debilitating. Can improve with time, but may not completely resolve or improve at all.
- Psychological consequences: PTSD is common among people with acquired SCI. Acquiring an SCI is a near-death experience.
Like I said, I’m a walking quad. For me, this means I walk inside my home with a marked gait abnormality and I fall often. I walk short distances (<1000 feet total, usually) outside of home with leg braces and crutches. I primarily use a manual wheelchair for mobility. I catheterize my bladder 6 times per day with an intermittent catheter via my Mitrofanoff channel, which takes about 5-10 minutes each time. I do my bowel program daily using a combination of manual evacuation and transanal irrigation, which takes about an hour every day. I depend on lots of expensive special equipment to stay alive- manual wheelchairs (primary and a backup), AFOs, forearm crutches, a special mattress topper to prevent pressure sores, a standing frame to stretch my spastic legs, 200 single-use catheters per month, bowel irrigation system, the list is endless. Neurogenic bladder and bowel alone are seriously disabling, and paralysis even more so. I’m quite severely disabled even as an ambulatory quadriplegic who doesn’t have the same degree of accessibility limitations due to being in a wheelchair 100% of the time. This isn’t to say that SCI is the most disabling disability ever or to otherwise compare SCI to others unfairly, just to provide accurate information about a poorly-understood disability.
If you’ve read this far, thank you. SCI is not well understood by non-SCI folks, and I appreciate it every time someone decides to learn about us.
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