Living with scoliosis: on the threshold of pain and disability

Living with scoliosis: on the threshold of pain and disability

People living with scoliosis and other chronic spinal conditions often live at the intersection of disability and professional life. In a series of vignettes, Mary-Pat Buss reflects on the obstacles encountered by the disabled in an all too often ableist world.

It’s my first year teaching, and I am a long-term substitute for a high school Speech teacher on maternity leave. I stalked this position for months, scouring the teachers’ lounges while working as an everyday sub, asking to join the tables occupied with expecting teachers at lunch. I have finally healed from my last surgery, and I want this new career outside of a cubicle to work out, so when I get the job, I throw everything I have into proving myself.

I learn an enormous amount quickly:

Be early. Leave the house by 6 a.m. to get to school on time.

Be prepared. The one day you are unprepared, that one closet genius student is going to ask you the question you don’t know how to answer.

Come equipped with coffee. Sweet, glorious coffee.

Don’t let the kid in the back with the gang tattoos rattle you.

Befriend the kid with the gang tattoos.

Don’t be a dick to the pregnant girls. They’ve had more than enough of that already.

Sacrifice your vanity and wear comfortable shoes. You will not sit down for most of the day.

If you have a spine condition, bring a heating pad.

If you have a spine condition, be careful which adults know.

If you have a spine condition, tell the kids. They will help you.

The list continues, but those are the basics.

A month into the job, I teach a lesson on censorship. For three days, we have candid conversations about the topics everyone is afraid to talk about—like politics, religion, race, and more. It’s the kind of lesson that only works at a Title I school where disadvantaged kids are limited in countless ways every day. The students welcome the release and get excited about the discussion.

The first two days run smoothly, and my fledgling teacher’s heart is happy. On the third day, we talk about taboo subjects and language. My mood goes downhill fast. A girl purposely makes a racial slur during my third period, and one of my black students tells her she’s a dumbass. Although I agree with the black student, I have to write them both up over the shouting match that ensues.

My fifth-period students can have a serious conversation about gender and sexual expectations, but it falls apart when we get to the use of profanity. Arturo, the perma-stoned kid that harmlessly giggles in the corner, decides that today is the perfect day to try meth. He stands and shouts a high-pitched fuck you before he skips out of my classroom—mid-discussion—with his middle finger raised in glee. I get to use the emergency button for the first time in my career. There is no getting the kids back on track after an event like that. Arturo just made high school history.

Are you living with scoliosis?
Share your story with with us

When the seventh period arrives for class, I am tired. They’re all first-year students—a uniquely unfortunate age group—and as they pile into the classroom, their shouts fill the tiny space. Backpacks are thrown to the floor and, although they refuse to sit close together, boys and girls flirt. Squeals abound. And they smell. God, do they smell.

I receive an 89.4 in his class. I know the exact score because he sends me an email after the final exam that reads, “You would have gotten an A if you had just numbered your proofs on the last page! Too bad. I hope your spine feels better soon.”

When I visit my father in the summer, my stepmother, Gail, has arranged for the women in our family to have an angel reading. I am wary of this sort of experience, but I respect Gail’s judgment immensely. Participation is expected, and a part of me is curious.

My father and husband left for the day, and the women arrive at the house. My stepsister, Kati, rings the doorbell first, and then her daughter, with her new baby, join us. I rarely see these women together, and I am both anxious and excited. We love each other deeply at a distance, but it is hard to invest time from across the country. It has been at least five years since the group of us were in a room together, and now, four generations of family gather under one roof.

The angel reader arrives in a flourish of energy. She wears yoga pants and a tank top, planning to leave the rural town of Freeport to teach in Destin after our family session. Gail greets her warmly, and the rest of us regard her with some reservation and hesitant smiles. When she looks at me, she stops.

“We will need to talk. My goodness…”

I have no idea what to say to that, and we all follow her into the living room. She asks to cleanse the house’s energy before we start, and we gather chairs around her spot on the couch as she concentrates in silence. I avoid looking at her, unexpectedly nervous that she may be able to push past my reservations.

When the reading begins, she talks to each of us in turn. I am second after Gail, and when she focuses her gaze on me, I feel a sensation like fingertips pushing on my shoulders.

“You must be more honest about living with scoliosis pain. It emanates from you. It crowds this space.”

Gail clears her throat. “I told her nothing, MP,” she says to me.

The reader continues. “Voice it. Right now.”

“…I’m sorry?”

“How much does it hurt?”

My throat starts to close, and I am unable to speak. I choke out, “That’s okay.”

“No. You need to voice it. Talk about the pain.”

It is a simultaneously bizarre and unsettling moment. The pressure I feel under the gaze of these women I love yet who know me so little feels insurmountable. The reader waits. I struggle to hold in tears and feel angry that I am being asked to lay myself bare.

“No.”

“Why won’t you share it?”

My stepsister takes my hand, and I break. Who knew that such a simple request would feel so overwhelming? I ugly cry and hate myself for it. My ears roar.

“No.”

“Why?”

Through sobs, I manage, “Because no one else needs to handle this but me.”

My stepsister hugs me, and I crumple.

Who knew that they could love me even like this?

My fiancé visits me from England after my sixth back surgery. My pelvic screws were just removed, two four-inch-long shafts of titanium that joined my pelvis and sacrum together, and I am not even close to recovered. Davy insisted that he wanted to be present for the actual procedure, but I told him no. We’re engaged, but I have spared him some details. Spine surgery is ugly and unpredictable, and I am not prepared to show him all of my realities yet.

While waiting to pick him up in baggage claim, I fidget and struggle to stay still. His plane is delayed an hour, and I am uncomfortably aware that the delay means another hour upright. I distract myself with a random magazine left behind on a bench and lean against a wall. If I sit, I will have trouble getting up. I’m stubborn, so I manage about 15 minutes before resigning, reluctantly sinking into a waiting chair. It’s not very comfortable either, but it will have to do.

When he does arrive, I’m ecstatic despite the nerve pulses throbbing down my legs. I struggle to get up, and I hope he does not notice. When we embrace, he comments on my posture.

“I thought you were better…?” His Lancashire accent lilts at the end of his sentence.

“I’m only two weeks out of surgery; it’s going to take a while,” I laugh it off, surprised. I tell him what the surgery entailed.

He nods, but I can tell he doesn’t understand. We go for months without seeing each other, so on the rare occasions when we are together, it’s like a vacation. We abandon our schedules and sleep in; I take him to quintessential Texas destinations like the Alamo; we forget the world. These are sacred events for us, and I can see he struggles to adjust to the idea that this trip is different. There will be no adventures.

I smile at him to disarm the discomfort we both feel. He grins.

“Well then, let’s get you someplace you can rest.”

We gather his bags and head to the car. I feel awkward beside him, unable to help him carry anything while he is loaded down with two weeks’ worth of clothing and supplies. I apologize and tell him I feel useless, to which he breathlessly says that I am being silly. Between my limp and his encumbered walk, we make quite a pair. I hide my sigh of relief when I am finally able to collapse into the driver’s seat of my Chevy Cavalier.

We stay at my best friend’s house and agree that both of us can use a nap. He’s tired from his trip and my pain is threatening to overwhelm my will to stay positive. We both curl onto the guest room bed, and he turns on his side to wrap an arm around me. We kiss, and his hand travels down my waist. He sighs against my lips.

“I’ve missed you.”

I smile because I have missed him too. When he pulls me toward him and presses his hips against mine, I try not to stiffen. He’s flown thousands of miles just to be by my side, the least I can do is put out, but I have to struggle not to wince. When his hand moves from my waist to the small of my back, I gasp in pain. My spinal incisions are still healing, and he has torn loose a stitch. The moment is ruined as he hunts for tissue and dabs away the blood.

When I stop bleeding, we sit upright in silence on the edge of the bed, close but not touching. I no longer bother to hide that staying in this position is hard for me, but we both do not move. Several minutes pass.

“Davy, I just had screws removed from my hips. I don’t think I can.” I feel guilty like I am failing him.

It’s an uncomfortable moment, to say the least. He’s mortified that he hurt me.

“Oh, that’s quite all right.”

“Are you sure?”

“Yes, quite. I’m quite fine.”

The problem with English people is that they will never directly say what they are thinking. They hide in polite overtones.

“Really? Say quite again,” I tease.

He smiles wryly. “It’s just I’ve never had to see you this way before. Suddenly, I need to protect you… even from me, it seems.”

We laugh together, but there is darkness hiding in his statement. When we split a year later, he will tell me this is the moment that changed everything for him. How can you desire someone who is so easily hurt?

Caption:

Living with scoliosis often means navigating the intersectionality of disability, professional life, and feminism.

Credit:

©Sergey Nivens / Adobe Stock

Pain flare is the name doctors use to describe the periodic increases in discomfort that many people living with scoliosis and other chronic conditions experience. They come in waves, often without provocation. Living with scoliosis means I constantly struggle with pain flare. When one plain flare lasts for months, and eventually, I am sent to a pain management doctor—the “go-to” referral that is used when patients need more than over-the-counter pain medications. Legislation has made it difficult for non-specialized physicians to prescribe pain killers.

I am put on two 100-milligram doses of slow-release tramadol a day, with up to three 50-milligram doses of “breakthrough” tramadol to take as needed on bad days. Tizanidine is prescribed three times a day for muscle cramps. I call it Xanadu. The medications are excessive, but living with scoliosis means I have grown scared of discomfort and pain. My pain threshold has dropped since I started taking them.

I am also prescribed a series of steroid shots over several years. When I receive my last shot, I have a reaction. By the next morning, I am flushed all over, absurdly swollen, and my mood is wild. I am flying through a soft-focused spinning world. I grasp and flail to remain myself.

I force myself to go to work and call the pain management doctor’s office to talk to the nurse during my conference period.

“I think I am having a reaction,” I stutter and explain my symptoms.

“Well, are you sure it is from the shot?”

“I just had the shot yesterday. What else could it be? The area around the needle mark is red and huge.”

“We can’t verify that the procedure caused these symptoms. Have you been abusing your medication?”

“I am taking the medication exactly as the doctor prescribed.”

“Well, it sounds to me like you are abusing your medication.”

I cry over the phone in gasps as I fight to hold in my emotions. I tell her I have never abused my medications. In fact, I take them less than prescribed. Living with scoliosis means I am in pain and the constant questioning of my pain is killing me. I am angry. I am desperate.

“What should I do?”

“I’ll call you back after I talk to the doctor.” She does not call.

At the ER that evening, I learn my blood pressure is 216 over 111. I begin a month-long regimen of Benadryl and detox. I find a new doctor and drop down to one tramadol a day.

I split it in half so the withdrawals hurt less.

Another surgery happens, and instead of recovering at the catastrophe that is my mother’s house, I spend my time at my best friend Kimberly’s place. She understands my need to rest, and she is one of the few people unafraid of reprimanding me when I foolishly push myself. We’re both at peculiar places in our lives, having each expected to be different people. Living with scoliosis I am mobility impaired: sealed together with staples while on leave from my corporate job again. She is on hiatus from her final semester at school, suffering from depression and an internal restlessness that threatens to consume both her mental health and her marriage.

Read more: What’s your thing? Living with kyphosis is mine.

My family has taken to calling me a turtle, an unintentionally cruel nickname, because it both highlights my need to hunch from pain and my refusal to metaphorically come out of my shell. I’ve become quiet, preferring to spend my days and nights reading while fearing to ponder what comes next. Silence is easier than explaining the desire to shrink inside myself.

Kim, in contrast, has been nicknamed Killer Bee by her niece, and it fits. Her wit shatters the air around her and forces people to pay attention. It is this same conquering personality that is currently causing her to struggle; it is hard to be a force of nature in a world made for silent women.

Before surgery, she would drag me from my cocoon and take me dancing all night in Houston. We’d attend throwback parties at nightclubs like Numbers and sway in hypnotic rhythm to Depeche Mode and Duran Duran. I’d forget the pain as we created mad duets together on the dancefloor, giggling amidst the other misfits that crowded the place. The next day, I would suffer the consequences, but it was always worth it.

It only makes sense that when I need to heal, I turn to her.

I’ve been staying with her for a week, and it is time to change my bandaging. Wound care is gross. It involves careful cleaning and maintenance. There is a reason people go to school for nursing so that they know how to handle these tasks.

“Sis, I’m so sorry, but I need you to help me with the staples.”

She does not even wince. “Okay, let’s do it.”

When she pulls the gauze off, it stings. One of the things doctors do not tell you after spine surgery is that as your body attempts to heal, it will absorb the things that touch it. She tells me to hold my breath as she detaches the thin material from my flesh, separating the threads from layers of skin with infinite care, and tossing the remains in the trash. She then cleans the leftover adhesive from my back, and we both agree that before we bandage me up again, I need a break and to let the wound breathe.

I’ve always hidden my body from people, but when I am with her, this attention to modesty feels unnecessary. Her spouse, Justin, might as well be my brother. The three of us sit together in her kitchen— me with a towel over my chest—and eat leftover soup she warms up in the microwave. It’s dark outside, and the dim lighting in the kitchen reflects off of my staples.

“Ya know sis, it might be weird, but the staples are kinda awesome.” Justin laughs as he says this, but he means it.

“Seriously? I always think this part of recovery is kind of nasty.”

Kim shakes her head. “No, it’s beautiful, sissy.”

Uncomfortable with the attention, I refuse to look away from my dinner. Kim notices. Even when suffering, she is stunningly perceptive.

“Sissy, the staples glitter. And yeah, the flesh is red, and the scar is livid, but think of the strength it represents. When you heal, the scars left by the staples, and the incision will look like lace. I love it.”

“Yeah, seriously. That’s hot as hell,” Justin says.

I’m baffled by this description of my condition. Since I was 13, doctors have told me about my “deformity.” It has never occurred to me to embrace my difference as beauty. My spine has always been viewed as a failure.

We spend the rest of our dinner in silence, but when Kim suggests we replace my bandages, I ask her if she doesn’t mind waiting a little longer. She agrees because she understands the need to be free.

I have a bad visit to the doctor. He tells me that I need to severely limit my activity, be careful with my movements and that children are not an option for me. His delivery of this information is offhand as if it is no big deal. He has no idea that my husband, Matthew, and I are discussing having children. This visit is supposed to verify that I am okay to carry before we start trying.

My spouse is with me, so I let him listen to the rest of what the doctor has to say as I numb over. Mechanically, I ask him for documentation of my disability for work; I receive the forms for handicapped plates. My sub is only covering the first half of my day at school, so I need to return to work and teach after this news. As we leave the office, Matthew holds my hand. We don’t talk about it.

We drive to work together, and we are both relatively silent. As he pulls up to the back entrance of my high school, he tells me to submit my movement restrictions to the district before returning to my classroom. I promise him I will. We kiss quickly and part ways.

I send the district a fax of my doctor’s restrictions and start my workday with relief. The static that clouds my mind will clear when I am teaching. I look forward to losing myself in the routine: intro, lecture, guided practice, debrief, release, new class.

During my conference period, I tell the women I work with about the visit to the doctor. They’re sympathetic, and I am able to voice some of the thoughts rushing through my head as women are only able to do around other women. None of us try to pretend that the news I have received is okay. They’re good friends.

My principal arrives at the door and interrupts us. He asks to speak to me alone, and my coworkers leave. I am standing behind my desk in my small classroom when he closes the door behind them, and we are alone. He’s obviously upset. His face is red, and he is out of breath. He is carrying a sheet of paper in his hand.

“Is there a reason you submitted this paperwork?” He must have come straight from his office.

“My disability paperwork?”

“Yeah, that. I just got it.” He gestures with the sheet he is holding.

I move to come out from behind my desk, and he crosses the room to stand in front of me. I feel trapped.

“I wanted the district to know that I need to be careful with my back. I don’t want to hurt it more.” I blurt my honest answer. It does not matter that I am an adult; a meeting with the principal still reduces me to a child.

“Do you feel like this job is hurting your back?”

I blink, realizing he thinks I am trying to get workers’ compensation. This recognition allows me to recover some of my flayed confidence. “No, living with scoliosis means that it’s just hard for me to be on my feet all day. I wanted you to be aware that I can’t carry large amounts or bend too much. It has nothing to do with you.” I smile and laugh, trying to diffuse the situation. His anger scares me.

“Well, I don’t see how you can do your job like this.”

Baffled, I stare at him. “Do you have reason to believe I am not doing my job well, sir?”

My spine asserts itself at last.

He visibly checks himself, setting his lips in a thin line and backing away from my desk a few steps. His expression lightens marginally. “Well, this paperwork seems pretty serious.”

“I filed it because I want to continue working. I just need to make a few adjustments.”

“Teaching requires you to actively monitor the classroom. How can you monitor a classroom like this?”

My spine condition is nothing new. I have been living with scoliosis and adjusting to its needs since I was a child. For someone like me, this question is absurd. If it weren’t for the fact that Texas is an at-will employment state and he can fire me at any time for any reason, I would tell him so. But he is my boss.

“I will be able to monitor the room; I just might need to purchase a stool or something I can sit on to put at the front.”

“You need to be able to walk the room.”

“Is there something in my paperwork that says I can’t, sir? Do I need to withdraw it?” I’m starting to panic. “I just wanted to cover all my bases. I love my job; I just need to take care of myself. I’m sorry if I made a mistake.”

His expression relaxes now that I am reduced to apologies. He explains that I need to have more specific information recorded regarding my restrictions. I tell him that I will make those arrangements and remove my current paperwork immediately. He smiles, appearing pleased, and excuses himself. It is only when he is gone that I notice I have been gripping the edge of my desk, and my hand is cramped, my fingers unable to relax.

Credit:

©Sergey Nivens / Adobe Stock

When I withdraw the paperwork, the secretary I speak to tells me she wants to share a secret with me and that I should not quote her on what she says next.

“Don’t send in any paperwork, even with the changes. The principals are supposed to push you out when they find out you are injured or disabled.”

When I hang up the phone, I stare at the grey cinderblock walls of my classroom in silence. It feels like a prison.

My mother and I enter one of the elevators in Scurlock Tower in the heart of the Houston Medical Center. We’re on the way up to see yet another specialist. Two people are already inside the elevator—a thin man in a collared shirt and a slumped-over individual in a wheelchair. They’ve already pushed the button for the floor we are visiting.

The man in the wheelchair looks up at me, and we share a smile. “You seeing the back doctor, too?” I’m wearing a molded plastic back brace, and it is visible under my clothes.

“I am.” He grins at me, and I share, “Looks like I broke myself again. Big surprise.”

He laughs. “I’ve had 17 surgeries.”

“Seventeen?!” My mother gasps beside me. The thin man nods to her, and they look at one another gravely over our heads.

“I’m headed toward my third. No idea how many outpatient procedures at this point.”

“I’m Rafael, by the way.”

His smile is infectious. I feel like I have known him for years. I introduce myself while my mother and the other man stay silent.

“That’s my brother. He comes with me to all of these things.”

“Yeah? That’s my mom. We’re partners in this.”

“You been in a chair yet?”

“I spent a few months in one, yeah.”

“I hate this thing.”

“Yeah, they hurt like a bitch.” We laugh. Our bond is instant. We talk the entire way up, and I feel almost sad when the elevator door opens.

“Rafael, you got this. Fight the pain.”

“Same to you. Stay strong.”

Our caregivers look at one another with embarrassment. They do not understand what living with scoliosis is like. How could they? His brother wheels him to the seating area as my mother and I depart for the reception desk. Rafael tries to twist and look back at me as we walk away. I resist the urge to follow him.

Brother, I hope you stayed strong.

I’m standing on one of the cliffs at Garner State Park. My husband, Matthew, and my close friend, Lindsey, help me as I awkwardly stagger forward and up the limestone incline. I try to right myself at the small plateaus on the path. We all focus on our footing as we dodge loose rocks and sand. My companions are aware that I am pushing myself. Lindsey glances over her shoulder at me with wide, worried eyes when we come to particularly steep sections. She offers her hand a few times, and I refuse, not because I do not welcome the gesture, but because I am testing myself.

My spouse, well ahead of us, is used to this behavior and forges ahead. He does not like it when I do things like this, but it’s my way of challenging fate. Am I still limited? Yes, but I am also bound and determined to be stubborn as all hell.

The climb comes with its repercussions; we have to stop our trek early because I cannot continue, but I feel proud. What would that doctor who demanded I restrict myself so heavily say if he saw me navigating these hardscrabble slopes?

On our way down the cliff, I ask Matthew and Lindsey to stop. There is a break in the trees ahead, and the subtle beginnings of the Balcones Fault are visible in the rolling limestone hills surrounding us. I allow myself a moment to breathe and simply enjoy my success. Just a few months ago, I did not think I could accomplish this feat. I want to hold onto it for a little while longer.

It’s been several months since I quit taking pain meds, and I have left my job as a high school teacher and gone to graduate school for my Master of Fine Arts degree. I love my memories of my time working in public education. Still, I am haunted by the feeling that there is an intangible ​more​ I need to gain from my experience with disability.

Sometimes, I reflect on that time in my classroom, when the soft pressure of inexperienced hands reminded me that I can still learn and that a disability can lead to some of the most poignant lessons in life. My students took the place of my lifeblood and gave me permission to let myself feel human again. The surgeries and experiences of living with scoliosis have numbed me in many ways. But while I am here, standing on this precipice, my heart beats again.

Looking out over the valleys below me with these people I love at my side. Living with scoliosis I know pain will always be a part of my life. That knowledge is hard to swallow, but in these moments, when I am unable to deny my weakness, I also savor the sweet, ephemeral agonies of triumph. There is no cure-all for the hardship life brings, but for now, I will let myself pause. For now, I commit to feeling all of the sharp sensitivities that come with being alive.

Are you living with scoliosis?
Share your story with with us