Six years ago I shattered my spine in a whitewater kayaking accident. The bone shards of my second lumbar vertebra sliced into my spinal cord, severing communication with the lower half of my body. Surgeons rebuilt my vertebra and scaffolded my spine with four titanium rods. I spent a year in a wheelchair. After hundreds of hours of therapy, my body established new neural connections. I learned to walk again. I’m tremendously grateful, and I know it’s an inspiring story. It’s the story that many want to hear. But it’s not the story I want to tell in my writing.
Sometimes, when the electric sting keeps me awake, when, in the middle of the night, lightning bolts charge from my right thigh, through my groin, and up to what remains of my second thoracic vertebra, I take my pain meds and try to remember how fortunate I am to be able to walk.
If I want to shirk the reality of such sleeplessness and agony, I turn to my phone and find a video clip titled “Learning to Walk Again” on CNN’s website. In the video, Anderson Cooper narrates a three-minute montage of my recovery. It starts with the x-rays and MRIs of the shattered ruins of my spine. Then a string of videos that show me struggling in a wheelchair.
When the somber music turns inspirational, the video cuts to me walking in a robotic exoskeleton, then a shot of me walking with crutches. And finally, with cinematic flair, I throw aside the crutches and take a few labored steps on the first anniversary of my injury, a tenuous grin plastered on my face.
The video is uplifting. It is immersive and heartening, and when I watch it, I briefly lose the version of myself who is lying awake in pain, forget that my legs feel like they’ve been dipped in lava. Riveted by the visual narrative, I almost forget I’m watching myself.
When it’s over, and the pain returns. The CNN clip seems like a lie.
Because I can stand and walk, my day-to-day life is measurably better, a truth captured and beautified in the video montage. And certainly the story has been inspirational for many people. But the video’s omissions—the acute and chronic pain, the problems with my bladder and bowels, the grief of losing the person I’d been—are as much a part of my story as relearning to walk is. Perhaps more so.
I decide I need a more encompassing narrative, one that considers exasperation as well as progress, suffering as well as triumph. One that makes meaning not just from overcoming, but from the ongoing lived experience of pain. Maybe I can even exorcize pain through writing, transmute it into narrative. So I invent Eugene, the protagonist of my novella Conscious Designs. I give him a spinal cord injury. Maybe together we can find some sense in our suffering.
Buy the Book
Conscious Designs
The more I get to know Eugene, the more compassion I feel for him. I consider giving him a shot at escaping his pain, so I send him into a near future where technology might be his savior.
Because I want to take away the visual signifier of his disability, his mobility impairment, I gift him a much more advanced robotic exoskeleton than the one that retrained my nerves. Eugene’s device is so svelte, it can hide under his clothes. He doesn’t even limp like I do, except when the machine fails.
But making Eugene mobile doesn’t make his disability go away. What really plagues Eugene are the unseen aspects of his spinal cord injury: the neuropathy, sexual dysfunction, incontinence, catheterization, bladder infections, pressure wounds.
Somehow I feel there should be a catharsis for me in heaping my pain on Eugene, but I only become more aware of my suffering. Sometimes my left foot feels like the blood is boiling within it. I imagine bubbles of hot gas moving through the veins, my muscles spasming, the tendons stretched like they’re going to snap. I take off my sock and inspect my foot, almost expecting to find some grotesque version of foot. But it appears normal. How strange that this normal looking foot can host such an inferno within. It’s attached to me, but it seems foreign. I can’t speak to my left foot beyond the dim motor signals of a few surviving neuro-channels. It speaks back to me only in its language of pain.
I begin to write what this pain tells me. I send its messages to Eugene’s brain. And so Eugene and I become connected through our defective neurology. We both look back at our able-bodied past, the people that we were before we became disabled, mourning their deaths. We both come to realize the paradox of pain: it’s universal, but intensely private. It should connect us, but it isolates us. Eugene and I spend the summer together, but together we find no truth in the chaos.
I want something better for Eugene. I give Eugene the option to escape his body by uploading his mind into a virtual world. A world in which pain can theoretically be edited out. A world entirely ruled by pleasure, a kind of hyperbole for the hedonism of our own time. Maybe if Eugene decides to upload his mind into this new digital world and create a virtual, able-bodied version of himself, then the real-world Eugene can come to terms with his spinal cord injury.
But I’m not confident in the truth of this story either. I’m not sure technology can free us from ourselves.
For me, Eugene’s experience in my novella is a more authentic portrayal of my disability than the story produced by CNN. The true nature of disability is an inner experience.
In Conscious Designs, Eugene is given the choice to branch his consciousness into two separate selves: one that would continue to suffer in the real world and one that would live free from suffering in the digital realm. To me, neither version seems desirable. I no longer want to be the real-world Eugene, whose neuropathy has become psycho-emotional pain, who can’t evolve beyond his self-pity and nostalgia for who he used to be. But I’m not sure I would eliminate my spinal cord injury either; with all its tragic elements, it has become an integral part of who I am.
I’m glad I don’t have to make this choice.
Nathanial White grew up in Maine and has lived in Mexico, Brazil, and Ecuador. His speculative fiction explores the human psyche, physical disability, culture, technology and consumerism. His debut novella, Conscious Designs, which was published in May, won the Miami University Novella Prize. He currently teaches Literature in the Rocky Mountains of Western Colorado.
This was a really interesting read! It’s great that there is an increasing amount of scifi taking a very nuanced look at disability experiences, and the complexities of imagining tech that eliminates disability. Will have to get my hands on Conscious Designs.
Sounds like you’d enjoy Fullmetal Alchemist, it’s probably one of the few mainstream books that doesn’t treat disability as feelgood overcomer Trauma Porn to make normies shed tears at a little boy losing an arm and leg, it’s a journey rife with pain and misery and the author doesn’t shy away from making prosthetics portrayed as both a costly nuisance and source of frequent pain for the many characters who have them in the books.
As someone who lives with chronic pain, I’ll be sure to check out your book since it sounds right up my alley. Best wishes to you, your career, and your body.
I found so much to admire, and relate to, in this piece.
Though in no way comparable to the sudden and catastrophic injury the writer suffered, my own spinal degeneration means I’ve suffered major mobility loss, three separate types of pain – neuropathy, muscular spasms, and bone-on-bone grinding pain (I’ve lost virtually all disc space between six vertebrae).
Its bad enough the way people look at you walking around on crutches or with two sticks – especially if your immobility has caused weight gain, thru inability to safely exercise too often.
But it’s what people cannot see that cause the worst problems.
Neuropathy is a *bitch*. Weird feelings. Heat, cold, wet, stinging, electric shock/lightning, itching, burning, and even strange mutant semi-sexual sensations (my worst damage is just at the place the nerves serving the hips, groin and thighs emerge from the spinal cord)… And these are not pleasant sensations – not in the least….
My bladder decides when it might be continent; if my neuropathy is especially bad, it usually portends a few days of watchful waiting in case of leaks or sudden desperation to pee. Thankfully, so far, my bowels are still reliable. How long that remains the case is dubious.
There’s nothing surgically they can do; I battled thru the pain of an estimated seven slipped discs (herniated discs) before finally going to my doctor after collapsing in a food store. The X rays and MRI scans revealed, as he put it, “that you should have come to see me years ago…..”
Being brave isn’t always advisable!
Really wish I could have a custom built exoskeleton, so that I could walk upright without canes or crutches. I bet that was so cool, even as it hurt so bad :)
This is truly inspirational. Last week, local news showed a partially paralyzed hockey player determined to stand at his graduation to receive his diploma. He did. I nearly cried watching it.
I too have a disability, though not as severe. I have epilepsy. It came out of nowhere. My agent and I are editing a MS about what is essentially living with seizures. The point isn’t in the writing but in the need to let loved ones know how it feels to go through something they, thankfully, haven’t dealt with. Writing it is cathartic. It helps.
We have an increasing amount of “minority” sci-fi emerging these days, so much so that I tend to miss the old school stuff when men were men, women were women and large furry animals from Alpha Centauri were large furry animals from Alpha Centaury. It’s almost as if the very existence of Edgar Rice Burroughs is going to destroy the fabric of our delicate new world. I think people are smarter than that, and if they want to keep their blinkered prejudice then they probably are. As an older person, I find it all a bit droll to find myself being lectured about issues that I have already thought about 40 years ago. When minority fiction works best is when it is not trying to preach or teach. I just completed Schitt’s Creek. I adored every episode. Tow of the main characters are gay and they (SPOILER) get married in the last episode. What was remarkable is that at no point did I feel I was being taught a lesson. Those guys just got on with their lives unjudgementally and it was beautiful to see homosexuality in a positive light, unvictimized and un self conscious.
I hope other minority issues can be presently likewise because we deserve the worlds we depict.
Sounds like the protagonist’s experience is an apt metaphor for those of us who suffer “invisible illnesses”.
I have ME/CFS, and while it is moderately severe in my case, it is debilitating, and there is not necessarily any external signifiers of being ill.
I tried to be “brave” for years before I realised that it was doing more harm than good.
Meanwhile I’m told that the, “(w)eird feelings (of h)eat, cold, wet, stinging, electric shock/lightning, itching, burning…” are all in my mind.
I’m grateful that I don’t have the excruciating pain that Nathaniel suffers. It tends to be constant low key aches like having the flu.
Not so keen on the cognitive impairment that makes reading and sometimes even listening to audiobooks impossible.
So yeah, would love to re upload to a new system as in Alistair Reynolds Redemption Ark novels, or Re-Coil by JT Nicholas, and or a new body! lol
Beautiful peace. And touching experience. Sending strength to the writer. And I hope it’s okay if I share this related ish for persons looking at this who might also be interested too. If not okay, feel free to scrap
https://file770.com/announcing-the-emeka-walter-dinjos-memorial-award-for-disability-in-speculative-fiction/
As a now disabled nurse, I am really pleased to see more and more representation out there of the realities of being disabled. I spent my career witnessing all the parts edited out of inspiration porn.
I would also like to address the perception that disability is “minority” or not normal. Disability can and will happen to everyone at some point in their lives. You will need someone else to wipe your butt at some point. Even if you manage to be a vanishingly tiny percent who are never seriously ill in life and are killed instantly, you were a baby once. And as the recent pandemic showed us, permanent disability is potentially one infection, one bad driver, one slip away.
This fiction is relevant to all of us. Well done.
I have a friend who lost her foot (long story). She complains that sometimes a dragon is chewing on the lost one. (plot bunny: what if this was actually true?).
So she has pain, itching etc. from a part no longer there. It’s *literally* invisible.
I will send her this column and hope she reads it.
Thanks, Nathanial, for putting my own minor problems into perspective. I went to buy the book from Amazon, but it appears to be unavailable for Kindle in Australia. I might try again in a few months.
#6 Paul, technically all those feelings are in your brain. Unfortunately, that piece of information is not helpful in managing the real damage you suffer. My pain (caused by nerves damaged in my lower vertebrae) gives me things that range from numbness, pins and needles, shooting pains, a loss of proprioception in one leg, and random severe cramps. The last has a physical symptom that I can deal with by stretches and massage and heta, but the rest is also in my mind, the organ that feels pain. Like you, I’m glad I don’t have problems with the extremes Nathanianial does, nor your own, and can read and listen without problems. To you and all the others who commented, thank you for what you have shared. For what it’s worth you have my admiration for sharing your stories.
I had a spinal cord injury with a horse 15 years ago. Overnight I lost who I had been, and there is a deep sense of mourning. Others looked at me at 45, and I looked fine. People thought I was a drug addict because I need to manage the chronic pain. I have never abused or misused my meds. Others thought I did not deserve disability, and treated me like a horrible lazy person. All these years later, I have mostly come to peace with most of it. I went from driving cross country try, to barely being able to drive to the store and back. I can not sit long, which took church out of my options. There is so much people do not see or understand. I miss riding my horses, but I am grateful I survived. So much I wish I could still do. I am much more fortunate as this was more gradual in many ways. Multiple surgeries. But I can walk most days. Thankyou for sharing the truth. Most people do not get to just overcome like on some show. You have accomplished so much, and can open many eyes to the truth about spinal cord injuries.
For a masterful treatment of disability in SF, read the Miles Vorkosigan novel series by Lois McMaster Bujold. Some of the best ‘hard’ science fiction ever written, and not a trace of inspiration porn.
My late husband broke his neck in a diving accident in 1970. He was 15 years old, but the technology of trauma rooms had not yet been developed, and spinal cord injury treatment was still in its early days. I often thought, every time we had to break in a new doctor (because of an insurance change) that I could write a handbook of the misconceptions that medical professionals had about SCIs.
Number 1 is that they’re all alike…you could line up 15 people with C5-6 injuries and, despite the similarities, each one will have unique neuropathies, patterns of spasticity or sensitivity, etc.
Number 2 is that they can’t feel pain below the injury, even surgical pain. I once had a surgeon try to tell me that my husband wouldn’t need pain medication after major abdominal surgery. I finally convinced him that an incomplete injury still allowed deep pain signals to reach the brain, but it still makes me shake with anger that he was so reluctant to believe me.
I was diagnosed with moderately-progressed Relapsing-Remitting Multiple Sclerosis as a 3-day late 24th birthday present in 2020.
Its frustrating, because it’s unpredictible and entirely random, when I’m going to have a bad day… or bad hour. Or a day that goes perfectly until BAM! My nice jog leaves me skidding across concrete, or my left leg steps instead of my right, or my grip failing leaves a kitchen floor covered in shattered glass.
One day, I’m actually //running// up the stairs to get my roommate’s epi-pen to her before she heads to work, the next, I’m in so much pain, I can’t get out of bed, and need her home just so I can eat or get to the bathroom.
And don’t even get started on what it feels like having to wear protective uhh… material because my bladder leaks, and getting crap from people because I still wear a mask, actively avoiding people or places where I would spend time around anti-vaxxers, because my suppressed immune system places me in exactly the group of people their intentionally putting at risk, even if it means not seeing my family at holidays or going to birthday parties for my kid cousin.
And the pain. Too much heat makes every symptom act up… but cold? That’s so much worse. The pain of stripped nerves is indescribable, and my normal day hovers around a consistent 4… but cold days, nights, hours- even just jumping in the pool and staying in for a minute or two left my whole body intensely painful for several days. The water flashing cold for a few seconds during a shower is cause to go straight to bed with a cocktail of benedryl, ibuprofen and tylenol. Putting cold groceries away is signing up for at least the rest of the day and coming night- sometimes as long as a week- with my grip being weak, not being able to type because my fingers feel like snapped rubber bands and drawing? I’m too achy and shaky to do that too… and just warming them back up does little.
Since I was diagnosed, so much around me has changed, and so has so much about me… and the worst part, is that feeling or worthlessness, especially and specifically in regards to finding a partner and hopefully? maybe? a future spouse. I grew up with an abusive mother, so my self-respect, self- image and self worth have always been abysmal… but now, I think about this too long, and self worth is worthless, self image is unrecognizable, self respect is a foreign luxary.. and self love becomes self-deprecation as a form of coping… not a great one, bit making self-deprecating jokes is better than what I watched my mother do.
After all, unlike her, I still got a lot of fight left in me, and hope hasn’t abandoned me yet either.