Reborn

I was sitting upright for the first time in about a week. I’d tried a few days earlier, but very soon my head pounded, and I vomited down myself. They said the lumbar puncture could do that. Now though, I could use the bed remote control to sit myself up. Under the white sheets I could make out the shape of what was supposed to be me. It just lay there, still. My body was not my own. They were using phrases like, “severe weakness,” and, “loss of function,” but eventually someone let the “paralyzed” word slip. It slipped from their mouth and, on the way to the floor, it thumped me in the chest. Paralyzed.

“Right, Helen, I think it’s about time we got you in the shower!” said the healthcare assistant, grabbing towels from the trolley as the other one stripped the sheets back to reveal my legs. The flesh just pooled around the bone, spreading out in an unrecognizable splodge.

“What size hoist sling do you take?” the first one asked.

“I don’t know, I’ve never been in a hoist.” I replied.

“Well, how much do you weigh?”

“I’m not sure, thirteen, maybe fourteen stone?” I guessed.

“How can you not know how much you weigh?”

I didn’t respond. I didn’t have the energy to explain I’d chosen to stop weighing myself a long time ago. It was a positive choice. I’d stopped obsessing over half-pound losses and gains. I didn’t sit in the bathroom and cry quite as often. The healthcare assistant tutted and grabbed a hoist sling, before her and the other one rough-handled it under me. They were so fast, experts at it, but I wasn’t an expert and it felt brutal, almost. The sling was attached to the hoist and we were good to go.

A nervous giggle rose up in me as I rose up in the hoist, “It feels weird!” Like a baby carried by a stork, I floated. Delivered into a new life, my wheelchair waiting for me. But first, the hoist had a weighing scale attached. The second healthcare assistant looked at the number – I didn’t – and she did that thing people do when they suck air through their teeth, the way mechanics do before they tell you how much it’s going to cost to fix your car. The “bad news inhalation.” I didn’t want to know. I didn’t want to be hanging in a sling like a giant, limp baby, at the most vulnerable I had been in my entire adult life, paralysed, incontinent, ashamed of my weight. But that is the power of years of diet-talk and media fat-shaming. I was ashamed.

Over the following weeks and months, I regained function in my legs. It was a slow, but incredible process.

“You’ve seen Kill Bill, right?” said Gillian, the physiotherapist. “Well y’know that scene at the beginning where she’s waking up from the coma and she’s saying, ‘Wiggle your big toe’ over and over, willing it to work?”

“Yeah?” I said.

“You need to do that. Just look at your toe and say that and mean it. It just needs a bit of encouragement.”

“Seriously? You’re having a laugh…”

“Seriously!” she grinned.

I started right there and then, staring at my pudgy big toe poking out from underneath the compression stocking. I’m not sure why but I chose to focus on my right one. “Wiggle your big toe, wiggle your big toe,” each one came out as an awkward giggle as my toe sat staring back at me, unresponsive.

“Perfect, I’ll be back to see you at the end of the week.” Gillian skipped confidently away, stopping at the door before turning on the spot and flashing me another smile, “Remember – Kill Bill!”

I liked her. I didn’t believe it could work, but she’d made me laugh. I needed that.

A couple of days later, I was doing my “Kill Bill’s” while my partner, Kirsty, encouraged me. It felt ridiculous and pointless. Each time I willed that toe to wiggle but it didn’t, my mind spiralled into the future. How could I go home if I couldn’t walk? We live up three flights of stairs with no lift. I’d have to give up my job and I’d only just been promoted. I’d have to sell my car. I tried again, for Kirsty more than for myself, “Wiggle your big toe, wiggle your big toe.”

Kirsty sat near my foot, her usually bright blue-green eyes thoroughly exhausted with worry and lack of sleep, but forever my cheerleader. “C’mon! Wiggle it! Wiggle your big toe!”

“Okay, okay, I’m trying! Wiggle your bi...”

And it did. It actually did. It was the tiniest little movement side-to-side perhaps a quarter-of-a-centimetre (I’d envisioned an up-down wiggle, but I wasn’t going to be too hard on myself). We gasped in unison, looked at each other in disbelief and back at my toe to see it happen again.

“You did it! You did it!”

With that we launched into an embrace, the kind where tears soak the others hair and shoulder, and sobs are felt deep within each other’s chests. As we held each other, deep within my body, new neural pathways were created.

I made it home. I climbed every single one of the twenty-four steps up to our front door. I did, however, give up the job and sell the car. It turns out that having Neuromyelitis Optica doesn’t actually turn you into Uma Thurman. Instead, life becomes pretty slow and difficult. In hospital, I had felt unstoppable. Each day brought a new achievement – I flexed my ankle, stood up, took a step. It sounds bizarre, but I was on a high. Doctors, nurses and patients watched as I went from wheelchair to walking frame to walking stick, blowing their expectations out of the water. By the time I got home, it had all slowed down. I was not too far away from functioning “normally” that it seemed inconceivable, but far enough away that I felt, well, disabled.

As someone who enjoyed all aspects of able-bodied privilege for the first twenty-seven years of my life, it wasn’t easy to explore what disability meant to me, practically and emotionally. It was even harder recognizing my internalized ableism.

A year later, I was filmed as part of a documentary about young people who became suddenly disabled.

“Right Helen, we’d just like to get a shot of you heading through those doors,” said Kate, the producer, before turning to the camera crew to discuss the shot.

“Sorry, you mean through there?” I asked, pointing to the doors I knew she meant, at the top of a few steps.

“Yeah, is that okay?” Kate knew I could walk up a few steps. She’d seen me do it.

“Ugh, do you have to film me doing it?”

“Absolutely not if you’re not comfortable.” I knew she meant it. “Do you want to talk about it?” she asked, taking me slightly to the side.

“Well, erm, I just look really disabled walking up the stairs” I said, hearing the utter ridiculousness of it as the words escaped my mouth, following them with an anxious laugh. I was saying this to a woman with cerebral palsy who walked with a walking stick.

Kate laughed, “You do realize what this documentary is about, don’t you? But seriously, don’t worry about it.”

We didn’t film the shot. I did worry about it. How was I going to live the rest of my life as a disabled person if I couldn’t accept it and if I didn’t want other people to see it? That night, still partly on a high from a day’s filming, and partly disappointed in myself for chickening out of the shot, I decided to get an early night. I sat on the edge of the bed and caught sight of myself in the mirror as I took my sweatshirt off and threw it across the room in the vague direction of the laundry basket. I’d been unable to wear a bra since I’d been in hospital because, as feeling came back, a lot of neuropathic pain came with it. Being braless meant getting used to the actual shape of my breasts, not a “lifted-up and formed into nice, round shape by an expensive-but-worth-it-bra” version. I hated them just sagging there. A few purple lines had appeared on each one to match those that scarred my stomach. I’d only seen stretch marks on new mothers before, never on someone childfree like myself. But rapid weight gain thanks to steroids meant I had them too. I didn’t recognize that body in the mirror. It wasn’t mine. Even the face was unfamiliar; tired, rounder cheeks, dull skin showing through the day’s makeup wearing off. That wasn’t who I had planned to be. Kirsty came into the room.

“Hey, let me grab your pyjamas.”

I smiled in response, blinking back tears as she turned her back for a moment to reach into the drawer. She chose the red pair with penguins in Santa hats, even though it was June. She knew they would make me smile. It worked.

“You looked beautiful on set today,” she said, kissing me on the forehead, “I’m so proud of you.”

Then, without words, we went through the routine we were so familiar with. I shuffled my bum out of my jeans to save myself the effort of standing up again. Kirsty took them and pulled them from my legs before throwing them towards the laundry basket, a better shot than my attempt. One by one, she removed my socks, first the left one, then the right. Pausing for a moment, she held my right, big toe and gave it a wiggle.

“You’ve come so far.”

“I know,” I smiled.

Neurons fired, muscles responded. I wiggled my toe all by myself. My incredible body had survived extensive inflammation of the central nervous system. It had survived paralysis, sepsis, a superbug, and some pretty grueling physiotherapy. It had relearned to do everything it knew so well until that day, nerve by nerve, muscle by muscle. My body would never be the same, but I was so amazed by everything it had achieved. It was reborn. It had been hoisted up and delivered into a new life.

-Helen Lear

Helen lives in Central Scotland with her fiancee Kirsty and their two dogs. She was diagnosed with Neuromyelitis Optica in 2014. Although Helen doesn’t work due to her health, she is a very creative person who writes, enjoys travel, and collects vintage items. She was recently published in Silk & Smoke magazine.