We can probably all agree that sleep is important. It has been getting harder to get quality sleep as I add more years to my time as a quadriplegic, so I decided to do a little research and a lot of reflecting.
Sleep is often described as the foundation of our physical health, brain function, and emotional well-being. When we get enough good-quality sleep, our bodies and minds are better able to handle memory, immunity, and everyday stress. On the flip side, ongoing sleep disruption can increase pain, affect mood, strain the heart, and lower overall quality of life (Walker, 2017). For people with disabilities, sleep challenges are even more common, often shaped by pain, secondary health conditions, and the realities of caregiving and nighttime care routines (Karagullu et al., 2014).
I know I am far from alone in struggling with sleep. Many people, disabled and non-disabled alike, fight restless nights, insomnia, apnea, and exhaustion. And I also know that many people have it far worse than I do. Still, this is my experience, and it has reshaped how I think about rest and nighttime itself.
A Thing of the Past
As a teenager, I could sleep endlessly if my parents allowed it. Morning wake ups around 11 AM were fairly common if I was feeling extra lazy. Sleep felt indulgent and effortless. What I would give to relive that teenage tranquility.
Later, in the Army, I developed a superpower—I could sleep anywhere, anytime, under almost any circumstance. Forty minutes to grab breakfast from the chow hall? I would cruise through the line, grab a couple hard-boiled eggs, and be out cold for a thirty-minute power nap. I slept leaning against massive vehicle tires during operations. I slept on rocky terrain with nothing but a sleeping bag between me and the ground. I slept laying in the prone, switching off with a teammate between pulling security and catching some sporadic Z’s. Hell, I could even down a coffee and still manage to pass out on command. I even developed the ability to doze off while standing by tucking my chin into my body armor to support my head. It didn’t matter where I was. Within minutes, my body could rest.
Sleep wasn’t something I thought about. It just happened.
When It Started
My struggle with sleep has been gradual but the cause is unmistakably my spinal cord injury.
During my inpatient hospital stay, I spent an enormous amount of time confined to a bed. Before I had a loaner wheelchair, before I had my own chair, that hospital bed was my entire world. I was tethered to tubes and wires that monitored my body and kept me alive. ICU delirium, constant interruptions, and strict bedrest shattered my sense of day and night. I wasn’t watching the sun rise or set. The only signal that it was “time to sleep” was a nurse coming in with medications meant to knock me out.
When therapy finally began and I started getting out of bed, I felt a blissful return of autonomy. Even being upright in a wheelchair felt like freedom. I never wanted to lose that again.
Spinal cord injury brings a long list of secondary conditions: blood pressure instability, skin integrity risks, bowel and bladder complications, and more. Even sitting upright in my wheelchair carries risks. Too much time in one position increases the chance of skin breakdown. Every day becomes a careful balancing act.
From morning until night, I am upright in my wheelchair just as an able-bodied person is out of their bed. That makes nighttime different for me. Night is when my body must do the opposite of everything it has worked to maintain all day.
Bedtime, But Make It Complicated
Most of my care revolves around transferring to and from bed. Overnight care includes turning and catheterization, which means interrupted sleep for both me and my wife. When I get into bed around nine or ten at night, I start on my left side. I have to choose my position carefully because I will remain in it for the next four hours. What was once a chance for my body to “factory-reset” has become my least favorite time of every day.
If I’m lucky, I fall asleep. If I’m not, I lie there uncomfortable, wanting to shift or adjust, but unable to do so on my own. The question becomes whether I’m uncomfortable enough to warrant waking my wife. I try to endure it for her sake, but often I give in. Time to rotate, like a pig on a spit.
Kass helps me flip to my right side, and I pray that sleep comes. I lie there for another four hours, often longer. I can feel my guts slowing to an even more extreme crawl than usual. Gut motility is heavily impacted by spinal cord injury, and nighttime naturally slows it further. The bloating and discomfort make rest even harder.
Eventually, light creeps through the cracks in the blinds. Morning has arrived. My body aches from the night, from the hours spent on my sides, but the pressure relief on my backside is a necessary tradeoff I have to accept.
When my wife’s alarm goes off, we begin our morning routine. We have it down to a science. As she helps rotate me onto my back and we choose my outfit for the day, muscle spasms hit like a taser. My legs flail, then stretch out stiffly, like a cat stretching after sleep. It hurts, but the change in position also brings relief to my hips and shoulders. The spasms settle. Kass transfers me using our ceiling lift, either into my shower wheelchair or my power chair, and the day begins.
Not every night is like this. Some nights I sleep deeply—even sleeping through my middle-of-night turn. Some times I land comfortably or rotate into the perfect position and knock-out. Some mornings come without nerve pain, stomach aching, and muscle spasms. But other times are absolutely brutal and the notion of starting my day becomes a daunting task.
Over time, I’ve come to realize something that still makes me sad to admit: sleeping has become my least favorite thing to do. It feels like wasted time when I’m not productive, and it fills me with dread knowing that my care needs will peak and start all over again.
I am fortunate. I have trustworthy overnight care and access to adaptive equipment that supports my health and safety. My dislike of nighttime is not a complaint about those supports. It is simply my reality. What was once a time to reset has become something I brace myself for. I’m not quite sure if or how that changes, but here’s to hoping it will. Alright, time for a nap. Thanks for reading!
References
Karagullu, Hilal & Gür, Ali. (2014). Sleep Disturbances in Patients with Spinal Cord Injury. 10.4172/2161-0533.100016.
Walker, M. (2017). Why we sleep: Unlocking the power of sleep and dreams. Scribner. ISBN 978-0-241-26906-0.
