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Spasticus Rex

Spasticus Rex

By: Sarah Jones

In her third column, the writer recalls her desire to be “normal” in the face of creeping disability.

I first learned what a "spastic" was during mass. From a muttering, puritanical nun, unimpressed by my new best friend and foster brother, Karl. He was severely physically and mentally disa- bled. When I later asked my foster mother Mary what the nun meant, she said, “That’s what Karl is.” A spastic. “But if you ever call him that, I will hit you."

It wasn’t long before I realised my school considered me a "spastic" too. Only, they disguised it with the word “special”. That playtime, I catapulted my plastic, pastel-coloured NHS glasses across the primary school playground. I didn’t want to look “special”. To be muttered at like Karl. Or seen as disabled like my dad. He’d been in an accident and was brain damaged. But, to me, my father wasn't like Karl at all. He was funny. His coordination was a little off and he would slur his words at times, but I didn't care. He looked normal to me. I needed only to hide his disabled parking badge to keep this perception up. Espe- cially when we edged closer to my school in his banger. Tucking that badge away from sight was my way of projecting us as strong, able-bodied people, totally unworthy of humiliation.

I fought back against this perception in other ways too. I began to push myself, desperate to be seen. Doing everything and anything. As long as I was doing, I was worthy. I adopted American-style power thinking: I can do this. I am strong. I started to run everywhere; when I jumped off a bus, I would run to my destination like my life depended on it. Like my life was normal.

When I was 28 I ran to India, and the walls of the life I had worked so hard to build came tearing down. My blood was laced with anti-malaria tablets, but the mosquito that bit me had another disease at its disposal. It felt as though a torrent of glass, thousands of individual shards, descended from the heavens to impair me. I couldn't breath. I wanted to die. The words became a mantra. When I was rushed to hospital, I found that if I didn't receive an immediate blood transfusion my mantra would be confirmed. But they don’t keep blood at the hospital in India. I didn't even know what my blood type was. I was barely conscious. I started to feel incredibly sad. Not scared, but sad. I had been rushing everywhere. I didn't step back enough. I hadn’t appreciated the individual moments in life. I could see with utter clarity that even though my life had been pretty fucked up, it had been pretty fucking good too. At least I could feel pain! What was I going to feel now?

I felt ready to die, but survived. Later I was diagnosed with severe myalgic encephalomyelitis, a neurological autoimmune illness that presents a lot like late-stage AIDS. It means my heart beats incredibly fast, jumping to over 120 bpm when I do something arduous, like change position. It makes me feel dizzy and nauseous and I throw up, weekly. All my joints are soft and easily dislocate. On a good day, I can’t stand for longer than a few minutes, even with support. I experience debilitating pain even when lying down, eyes closed, in complete silence.

I survived but never recovered. Not even after lots of rest. Not even after eating raw, clean healthy food and chucking coconut oil in my gob and slathering it all over. I still feel sick. I've tried everything. I went back to work and made myself more disabled. My American-style power thinking can’t fix this. Because having myalgic encephalomyelitis is like having horrendous flu and being forced to run a marathon backwards every day.

I found myself having to deal with another reality of severe illness: other people’s perceptions. Myalgic encephalomyelitis is also known as chronic fatigue syndrome, which is like calling lung cancer the big cough disease. Healthy people are often unable to comprehend this, to comprehend what it feels like to never feel well. That it means I only manage to wash once a week because of the pain. That I can only handle one visitor a month because noise can hurt me as much as a physical punch. That the stimulus of everyday life causes my entire body immense neuropathic distress, so that I spend most of my time alone, motionless and silent, feeling like I’ve been buried alive.

But my illness has also afforded me the opportunity to become braver. I had always believed my body must be able and strong to be worthy. Wheelchairs, the great symbol of disability, of being seen the way Karl was seen, had always conjured up immense fear of being visibly weak, of lacking strength. It took hundreds of sessions of unknotting preconceived ideas about self-value to undo this. To accept my body and its disabilities. To accept that I needed the humble wheelchair, like I needed the NHS glasses as a child.

I now associate my wheelchair with strength, freedom and power. I love her and she has become beautiful to me. I look people straight in the eye when they stare at me, to say, yes, I'm reasonably young and I need a wheelchair. I embrace my reality. I have made friends with ill health. I have come to see myself like a pet; rather useless around the house, unlikely to be able to have long conversations or go out partying, but still loveable. I don’t need external validation. My existence is worthy in its own right.

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Want more from Sarah?

Go read her piece on coming out. Or Love & Neglect, a survival story.