Bent Street 3. Tiffany Jones

      OUT ON THE FRINGES

      STEPHANIE AMIR

      My legs and hands become increasingly paralysed for three days and four nights before I decide to go to a doctor. By then my feet are cold, lifeless lumps. Bending my knees even slightly causes my legs to sear with pain and collapse, but somehow it is not until my hands are too weak to pick up my morning cup of coffee that I admit to myself that something is very wrong.

      In the emergency ward, I have blood tests and muscle tests and a test for the flu. Later the doctor orders a lumbar puncture, which involves sticking a giant needle between my vertebrae to extract spinal fluid. He asks me to curl into a ball and hold still.

      To keep my mind off the pain I focus on memories of doubles-trapeze training, imagining myself bracing my abdominal muscles and holding tight to the forearms of my flyer so she won’t fall. Surely if I can flip a woman through the air, I can hold tight in a ball.

      Twenty minutes later, the neurologist comes in with my diagnosis. ‘You have Guillain-Barré Syndrome.’

      ‘Nah,’ I say, trying to be funny. ‘I ordered an acute potassium deficiency, so that you could give me one injection and my legs would work again.’

      ‘Well,’ he responds with a raised eyebrow. ‘We’d narrowed it down to Guillain-Barré, Multiple Sclerosis or spinal tumours, so from that list you got the pick of the bunch—at least you’ll recover.’

      Not everyone does recover from Guillain-Barré. It’s an autoimmune illness that attacks the nerves and the myelin sheaths that protect them, causing ‘ascending paralysis’ that starts in the hands and feet then gradually ascends up the body over hours, days or weeks. For some people, their whole body, including their lungs, become completely paralysed. There’s no reliable cure, so it’s mostly just a matter of keeping the patient alive until the acute phase is over, then months of rehab while the myelin sheaths grow back. Most people survive, but usually their bodies don’t go back to how they were before.

      I went to sleep in the Intensive Care Unit as the paralysis crept through my thighs and across my hips, through my fingers and towards my wrists. I could still move my arms and torso, but knew that by morning they might be cut off from my brain too.

      An hour later, I woke up freezing cold and shaking violently, my blood pressure plummeting. Terrified, I cried out and begged the nurse for more blankets. She turned off the drip (intravenous immunoglobulins, an immune-system transplant) and gave me some kind of opioid.

      Eventually the shaking stopped. As my body temperature returned to normal I felt hot under the mountain of blankets and absent-mindedly kicked them off. The nurse and I both looked at the blankets, then my legs, then each other. Then I was crying again, but this time with relief. The nurse said in twenty years working in ICU, she’d never seen such a quick turnaround of a Guillain-Barré patient.

      I thought the worst was over, and the most dangerous part was, but I’d entered a messier, more enduring stage. My friend Ben came to visit me and quipped: ‘You’re already a young queer woman with a baby and a Middle Eastern name. You didn’t need to add ‘disability’ to your list of minority groups.’

      When I got home from hospital, dinners arrived on our doorstep each evening. At first, showering and dressing used up almost my entire day’s energy so I spent the rest of it lying down and reading on the bed, couch or banana-lounge. I couldn’t parent beyond letting my eight-month-old crawl on or around me, so was totally reliant on my partner. A month later I was tanned from the banana-lounging and able to hobble around the house. ‘You don’t look sick,’ some friends said, meaning it as a compliment. But I was. I couldn’t even stand up to wash the dishes without collapsing in a feverish heap.

      Two months after leaving hospital my in-laws visited from Canberra and we went on a daytrip to Healesville Sanctuary, because we knew my daughter would love the bird show. I still couldn’t stand for more than a few minutes at a time so we borrowed a wheelchair. People smiled appreciatively at my father-in-law as he pushed me around, but either ignored me or gave a well-intended but infantilising smile, like someone might give a small child sitting obediently in her pram.

      Those patronising smiles jarred with my sense of self, and I wondered how long other wheelchair-users lasted before yelling at people. ‘This isn’t all that I am!’ I was tempted to shout, ‘I’m a politician and community leader! I was elected with the highest primary vote in my ward! I am responsible for millions of dollars of public infrastructure! I’ve already fulfilled five of my six election commitments in my first year! LOOK, I CAN SHOW YOU OUR STRATEGIC PLAN ON MY PHONE RIGHT NOW!!’

      Instead I stayed quiet. Rationally I knew that a person’s worth wasn’t related to their career achievements. Yet despite my frustration at the stereotyped expectations of what a person with a disability should look like or how they should act, I felt bound to fulfil them. On the days I was out in a wheelchair, I felt like I shouldn’t stand up in case someone thought I was ‘faking it’. When I returned to work I used a walking-stick, not because it made walking easier but because I was convinced that otherwise no one would believe I really did need the tram seat, or to sit down for the duration of any networking function.

      I felt disabled in the sense that I was not physically able to live as I did before, but also didn’t feel disabled ‘enough’ to consider myself a ‘real’ person with a disability. It started to mess with my head. Seeking clarity I messaged my friend Brigid, who has albinism and also understands people and humanity in a deep way that I, as a science-minded feelings-phobe, do not.

      ‘Oh, everyone feels like that,’ she said. ‘I feel like that. I have a mate who has cerebral palsy and most other people would consider her to have really significant disabilities but she still feels on the fringes of the disability community.’ I didn’t know how to respond. The idealistic part of my brain couldn’t get past the principle of equity of access for everyone including access to community and collective identity, but the logical part wondered whether inclusion in a community required active participation and contribution. Meanwhile the frightened part of my brain resisted any challenge to my former identity.

      Brigid—astute as always—shifted to a frame I’d understand better.

      ‘Imagine if a young bisexual woman came to you, as someone active in the LGBTIQ community,