“Can I sit here?”
“Would you mind giving up your seat?”
“Can we please slow down, just for a moment?"
It's been almost two years since I was diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder that, amongst its many comorbidities, is stealing my strength day-by-day. The shape of it still hasn't settled on my tongue. Those around me are now well-accustomed to my sudden exclamations if the breeze hits my shoulder wrong, bolts of cold lightning frying my delicate nerves as I double over for a moment. Knitwear in the summertime is my staple now, warming my wrists, my ribs, even as I sweat through heat waves. I know I look weird.
This spring, I picked up my first ever walking stick. It's stained deep brown, with a rubber base and a shepherd-hook handle; not many sheep to gather here in London, but it does the job. I’m sure I’ll own many more over my lifetime, but this one will always be special to me. It enters the room for me now, an elephant for people to cast sideways-glances at. I don’t know how to use it properly, but the relief of having something to lean on is immeasurable. Curved over the backs of chairs, hooked onto my rucksack, it grounds me. It also draws attention to me, from strangers who know nothing of my life. They couldn’t see the pain before; now it’s all they can see.
To the outside world: I entered the pandemic able-bodied. I’m leaving all these lockdowns greatly weakened each time, requiring assistance, pause, help. It's a strange thing indeed. I've been in pain for a long time now, well before the diagnosis, but to look at me, to pass me in the street, you'd never have known. Many of those close to me still don’t know, but the not-so-familiar weight of the stick draws attention to my issues far more than I’d have hoped. I’m ashamed of it, though I know I shouldn’t be. I don’t know how to talk about this yet. The wound is fresh, the diagnosis - oh, how I hate that word - barely forming its scar tissue over my elastic skin.
Some nights, I stand on the banks of the Thames, this little beach of mine, crunching pebbles under my fragile feet. Hearing them hear me, making noise together, scrapes of rock and bone deep into the quiet night. I’ve never been this loud before; pain makes you scream, makes you silent. The water takes it from me, just for a moment. I spend hours reading about pain, about others’ pains; “that’s me!” I delight, knowing that someone, anyone, gets it, understands me. It helps to see the weight we all hold, when our bodies can’t. Suspended, as if in the ocean, by our collective caring.
I still feel it, you know, the guilt, for taking up space. I wonder sometimes if I’m the girl who cried “disability!”, if I’m faking all of it. If people think I’m faking it; the eyes on me, as I step on the bus, stumbling ungracefully towards the priority seats. "I'm not just clumsy!" I want to say, wishing I could flash my hospital letters in their judgemental faces. (I am clumsy, but they don't need to know that.). Of course, this is all in my head; no one on the 172-to-Aldwych cares even slightly that I forgot my walking stick today, or that my cheeks flush every time I see someone else who seems to need this seat more than me. I can't stand it, the overthinking. Waiting for another old man to whistle at me again, for a car-full of teenagers to lean out of their windows and hurl insults at me, again. The red-brown threads of my ligaments already scream, at me, twinging with each step, each crunch of my knees as I try not to trip down the stairs of this double-decker.
But it's really not that bad. I'm prone to hyperbole, and everyone's come out of lockdown changed from who they used to be. I’m accustomed to the bitter chalk of painkillers coating my throat, covering the pain, making it palatable. Someday I’ll regain my strength; I’ll pull myself together, l’ll work on it. Until then, I can choose to leave the cane at home. No one ever needs to know how my muscles stretch beyond their capacity, how they blame me for their faults. Every time I leave the house, I have to decide: do I need the support today? Am I in “enough” pain to invite the judgement of strangers? I make my choice, everyday, shutting the door before I can change my mind.
I might go to the riverside again tonight. It’ll be the first time, since the world shut down. My hands will be full of familiar comforts to brave the outdoors: the soft knit of my sweater, the sharp scratch of my key chain, and, maybe, the curved handle of my walking stick.
©Stills from an untitled video series, filmed on the pebble beach.
Niharika Pore (She/Her) is an artist and writer, working in prose-poetry, filmmaking, visual cultures research and critical theory. She currently works with community-led institutions across London through workshops, exhibitions and research projects, exploring her relationships with race, disability, and queerness.