Out of step: Life with lupus and learning how to walk again
‘My brain gradually shut down until I barely remembered my name and had no control over parts of my body.’
I was 27 years old the day I forgot how to walk. At the time, I was playing the harmony part with my eight-year-old viola student on a simple piece from Book 1. I smiled encouragement as his forehead crinkled in concentration.
He played beautifully. I got lost.
That’s strange, I thought. I’d played that duet hundreds of times.
Alarm shot through my body.
I finished the lesson, barely listening, as my student chattered on about the latest escapades of Spongebob and his pineapple under the sea. I shut the door after him and his mother and turned to walk towards my living room couch, but my feet remained rooted to the floor. Lifting my foot and putting it down again felt foreign and unnatural, like asking my body to spring into a handstand. The file cabinet that was my brain had slammed shut on the folder labelled “leg movement”, and I didn’t have the key.
Unable to pick my feet off the floor, I shuffled, tentatively shifting my weight from foot to foot as if I were an especially clumsy ice skater. My legs didn’t hurt; they simply refused to follow directions.
Focus, I told myself as panic rose in my chest. You can still think and reason. Your mind still works; you just can’t walk. Don’t panic. Get help.
I called my mother-in-law, my voice steady even as the phone quivered in my hand. I sat on the bench by the front door until I heard her Grand Marquis screech into the driveway a few minutes later. I locked the door behind me and shuffled down the sidewalk towards her, my arms outstretched for balance. I shoved stacks of knitting patterns and a few balls of yellow yarn aside, then squeezed into the front seat. My mother-in-law patted my knee. Worry peeked out from behind her toothy smile. We didn’t speak. As the car rocketed through traffic, occasionally jumping curbs and once turning the wrong way onto a one-way street, I focused on my breathing.
You learned to walk once, I told myself. You can do it again. I repeated this over and over like a mantra.
I don’t remember the car pulling into the parking lot of my doctor’s clinic. I don’t remember the clumsy shuffle into the building, up the lift and into the waiting room. Like most women living with chronic illness, emergencies meant forgoing the ER and showing up without an appointment at your specialist’s clinic. Hospitals were for burns and cuts, broken bones and cracked ribs – straightforward injuries requiring a straightforward cure. My best chance at survival lay in the hands of the receptionist who knew my name, the nurses who memorised my chart, the doctor who took the time to piece together my haphazard trail of symptoms.
My mother-in-law patted my knee again when the nurse summoned me. The nurse forced a smile as she tried to hide the alarm in her eyes. The needle slid into my skin, the steroids burning as they spread from the injection site through my body. Needles would puncture my skin again and again over the next week, shooting higher and higher doses of medicine into my body that would ultimately not be enough to save me.
Over the next month and despite my doctor’s best efforts, my brain would gradually shut down until I barely remembered my name and had no control over parts of my body.
Forgetting how to walk had taken a second. Remembering would take almost three years.
The breakdown of my mind shocked me, but the breakdown of my body had been continuing. For the past four years, I had lived with lupus, a chronic illness whose symptoms are so mercurial that the graphic designers tasked with raising awareness had given up and used a giant purple question mark as the logo.
My diagnosis came after a year of exhaustion despite sleeping 12 hours a night, of not knowing why I couldn’t keep up with my colleagues in grad school, of doctor after doctor who stared at me suspiciously and pointed to normal blood tests. When the seventh doctor I saw stumbled onto elevated markers for lupus, I was relieved to finally know what was wrong with me.
Now I can get on with my life, I’d thought.
Sometimes I still laugh at how naive I was then.
Life with lupus is like being dumped onto an alien planet. Routines and social conventions I had always taken for granted suddenly felt like trying to breathe on Mars. Fatigue shadowed my every movement. Fatigue transformed the grocery store into triathlon with no medal at the end. The thought of a 40-hour workweek made me want to crawl under the covers. Standing in line became an exercise in endurance. My thoughts waded through the fog in my brain like an explorer through a swamp. I learned to notice, without shock or sadness, when parts of my body failed me. My classmates studied, progressed, and improved. Meanwhile, I struggled to relearn how to do the things I had always done.
Four years before I forgot how to walk, I’d already fallen out of step with the world around me.
After my diagnosis, I spent years pretending to be normal. No one looking at me would have guessed the pain I lived with every day. If “generic white girl” were a term in the dictionary, under it would be my picture. Pale skin. Medium length brown hair. Occasionally spotted leaving Starbucks sipping a latte.
But beneath the surface, I struggled. Driving to work felt like a four-hour workout. Prying my body from the mattress each morning was demoralising because I knew tomorrow wasn’t going to be easier. Life with lupus felt like running nonstop to keep up with society’s languid stroll.
When I abruptly quit work shortly after I forgot how to walk, my employer and students were shocked. Most of them had never known I was even sick.
I never felt more out of sync with the rest of the world than the year I spent bedridden and recovering after forgetting how to walk. My disease raged inside my body, erupting into life-threatening inflammation in my brain. I forgot my favourite colour, the foods I liked, what I did for a living. My husband contacted my students to refer them to other violin teachers since I could no longer write a simple email. I lost my ability to cook, do laundry, or even pick out my own clothes. I forgot my parents’ names. I couldn’t speak in complete sentences, instead muttering odd combinations of disjointed phrases and gesturing with trembling hands. Words jumped and scratched and chased their tails in disarray through my mind, scurrying just out of reach. One day, I asked my caretaker for a “head-thing” because I’d forgotten the word for pillow. She brought me a hairbrush.
The severe inflammation wriggling through my grey matter also destroyed my capacity to regulate my emotions. On the worst days, wild hallucinations and delusions tormented me as I struggled to understand reality. I wept as the walls spun and pinpricks of lights danced across the ceiling, seen only by me. Sometimes at night, the air around me would grow thick and gelatinous, rippling and folding in on itself like bread dough as I reached out to touch it.
“Do you see the fireworks on the ceiling?” I asked my husband.
“Uh … no?” he’d answered.
Chunks of my life are missing even now, like a book with pages ripped out of it. Within a month, my disease had stripped me of my teaching career, my ability to relate to others on an adult level, and my rational mind. The bright and competent woman that I believed myself to be drifted further and further away each day. No amount of steps could help me catch up.
My experience with this disease could be summed up in one word: tired. I was tired of my body screaming in protest and refusing to cooperate. I was tired of wanting to be like other young women my age. I was tired of being knocked down and having to rebuild my life.
There are no instructions for relearning how to be a person in the world. Because everyone’s grief is individual, there’s no guidebook for rebuilding a shattered mind. You can only take one small step after another and hope you’re moving in the right direction.
Lying in bed, I realised that maybe relearning to walk would happen on its own time. I couldn’t spell. I couldn’t remember my middle name. But something deep inside me, perhaps the ghost of the teacher I once was, contained all the knowledge I needed to survive. A teacher knows no difficult skill is learned in a day. Maybe I could relearn how to function as a human being if I broke the process into manageable steps.
I reached for the stack of printer paper my husband left for me by the bed and made a list of all I needed to relearn. Long-term memory. Short-term memory. Walking. Telling time. I wrote. I taped the paper to the headboard of my bed where I could reach it. It was all I had.
Years later, well-meaning friends asked me how I stayed clear-headed about my recovery – why I thought to make my list, how I overcame my rising panic to find determination. Lying in bed unable to remember whether I liked yoghurt or not, I felt anything but clear-headed. Panic surrounded me like air. But life with a chronic, life-threatening illness is like living in a world with fire-breathing monsters and flying monkeys. You learn how to dodge the flames and duck. You learn how to let fear whittle your focus down to a fine sharp point. You learn how to survive.
Over the next month, my medicine would force my disease into submission. As the inflammation receded from my brain, the hallucinations and mood swings would simmer down from the boil they had once been. I dipped my toe into reading flash fiction, still struggling to connect each sentence to the one before. Short stories progressed to essay collections, then novels as my memory grew stronger.
My long-term memory roared back like a flash flood. My brothers and I whispering ghost stories around a campfire. Sipping Mike’s Hard Lemonade after orchestra concerts with friends. The first doctor who yawned and looked away when I recited my symptoms.
Petrified at the idea of re-entering the world without access to my vocabulary, I challenged myself to write 500 words a day on any subject. I balanced my laptop on pillows on my stomach as my fingers traced the keys. The words sprang from my mind a little faster each day.
As I tapered off the steroids, my leg muscles slowly strengthened. I woke up one day in January to a lightness in my legs. I shuffled from my bedroom down the hallway towards the living room. When my quadriceps froze, I retreated to my bedroom. Each morning for weeks, I focused on the doorway to the living room. My hand brushed the wall as I stepped forward. The feeling of muscles slack against bones lessened over the next two months. The day I reached the couch, I snapped a picture of my feet on the footrest and texted it to my husband. As I grew stronger, my legs carried me to the kitchen I hadn’t seen in months, regaining my trust step by step.
Two years and six months after the day I forgot how to walk, I followed a friend through the door of a cafe. A bell tinkled behind us as the door swung shut. Apple tarts, chocolate croissants, and black and white frosted cookies beckoned from the display case. The smell of French onion soup wafted through the cosy room. My friend brushed a wisp of blonde hair out of her eye and ordered a chicken salad sandwich. I stared at the menu on the wall, shifting from foot to foot as she left to grab a table in the back. After ordering a cranberry pecan salad, I grabbed a tray and filled a glass with water.
In the months I spent in bed, I realised I’d never fully fall into step with the rest of society. Keeping pace with the rest of the world was never going to happen. Part of recovery had been learning to accept this while striving to be the best I could be in the body I had.
My thoughts and memory had gradually settled back into their usual patterns, but walking normally was a piece of the puzzle that had yet to return. Shuffling had morphed into slow steps as my legs gained the strength to lift my feet off the ground. Walking had slowly turned into moving clumsily at a normal pace. As my muscles grew stronger, my legs carried me to physical training and back. But even after 18 months out of bed, I hadn’t been able to shake the awkwardness and jerkiness of my gait. I could move from one end of a room to another, but my legs didn’t feel like part of my body. Walking still didn’t feel natural.
My friend smiled in support from across the room filled with people milling around like ants. Two children darted between tables as their mother scolded them. Beside me, a woman and her daughter piled plates high with bread and jam. Tension crept from my shoulders down my body.
Carrying a full glass of water on a tray across a crowded room was only a good idea if I wanted to be soaking wet.
I breathed in deeply and smiled at my friend.
Hmm … what if I move really slowly and keep my feet close to the ground?
I took a step, and then another. A child rushed past me, but I didn’t falter. My friend smiled patiently from across the room.
During the long months stuck in bed, I had spent many hours imagining the freedom of being able to move my legs, of having the strength to go to a restaurant with a friend, of the quiet joy of sitting in a chair in front of a mirror and putting on makeup to prepare for the day ahead. On days when confusion and depression threatened to take over, even these simple wishes seemed so far away as to be impossible. On those days, I would focus on one small step of my recovery.
Today, I will try to put on my own socks.
In an hour, I will try again to remember what day it is.
Right now, I will breathe and stay alive.
One step. Two steps. Around the man sitting in a chair. Past the drink machine.
I am standing in front of my friend, then putting down my tray, then slipping into a chair. I blink in surprise. My legs move as I had never forgotten what they were for. A piece of my brain that had gone missing suddenly clicks back into place, as if it had been waiting just for this moment.