«To be ill is to be a kind of ghost.»
– Susan Sontag
Autum has always been a ghost season. Here in the Northernmost parts of Europe, autumn is when the light begins to thin, the air sharpens; beginning to sting. Whether we recognize it or not, the world turns heavily inward, shedding what no longer belongs.
However, for many of us who live with chronic illnesses or disabilities, this part of the autumnal season, never really ends – it simply changes its shape throughout the year.
In a way, its like living between two worlds; halfway in the visible – halfway in the invisible.
And through this, we learn to hold our own ghosts close.
The Ghosts of What Could Have Been
A few years ago, I was admitted to a specialist neurological hospital to try out new epilepsy-medications. While there, I met a bunch of people who – like me, had their lives recently split in two. Many of those admitted with me had recently developed epilepsy at an adult age; whether through hormonal issues, car-crashes or even through brain tumors. It was as if one day they were out driving cars, working high – risk jobs at oil platforms and raising their children without any further concerns; then the next day their bodies and brains turned unfamiliar and unreliable.
While these thing never happened to me, seeing as I was born with this condition – I remember feeling such an ache for them – for what they had lost. Yet, beneath my empathy, I also felt deeply grateful, and a strange kind of relief that I was lucky enough to not know the feeling of such a massive before – and – after.
Because, yes – I still remember my late teenage years, and early 20s, where I had considerably fewer seizures overall. But the knowledge that seizures could come any second was still there – and certain things like driving a car, or working with heavy machinery was still kept unavailable to me.
My point is that my body has always been this way, thus I’ve never had to mourn the life I once had – as there was no «before» to loose.
So in a way, we met in that quiet hospital ward, as two kinds of ghosts:
those angry and deprived; haunted by who they used to be – and those fascinatingly adaptable; more so haunted by who we might have been.
And the thought still lingers in the building…
«We all carry versions of ourselves that never made it out alive.»
– Silje Elsrud Yttervik
The Elegance of Survival
Taking the concept of adaptability into full force, these days, whenever I go out in public, I always dress with intention; elegant, a little funny or chic – and very composed.
Not because I tecnically have the energy for it everyday, but because aesthetics have slowly become my armour.
Because, whether I personally agree with it or not – people are shallow.
Most people respond to surfaces, much more than they themselves are aware of.
The same can be said about me!
And when I look polished, other people tend to treat me with the same level of grace.
From my part, this is not vanily – but strategy.
In a world where disabled people are so often pitied, ignored or even seen as fragile beings – elegance becomes a ritual of survival.
It’s how I remind myself – and others, that I am still here, still whole – and still sovereign.
Many people don’t consider this fact, but being visibly disabled
carries a high risk-factor.
Because, on the one hand, showing one’s disability is to open the door to danger. By openly announcing what might hurt or harm you – you (unfortionately) become a very attractive target to abusers and predators, who sense dependancy – and see opportunity.
On the other hand, for many of us – hiding our disability can be both completely impossible, as well as equally dangerous.
To put two of my own experiences up against one another; once I didn’t have time to dress up, and had a seizure on the buss, when another passanger tried to rob me. He would have succeded as well, were it not for the fact that I carry all of my most valuable items at invisible areas (for this very risk) – and the only thing he got a hold of, was my building’s opening cards (which I just had to turn of – and get new ones).
On the other hand, once I got a seizure on the buss, and was dressed too elegantly – and people were afraid to help me, fearing I would poorly retribute if something were to happened to me or my things.
To put it bluntly: If I conceal my disability too well, i might have seizures with no help nearby. On the other hand, if I show too much I migh become a target for pity or crime.
As in the words of Audre Lorde;
«Your silence will not protect you».
– Audre Lorde
But, sometimes for us, it actually might.
In many ways, this is the paradox of disabled lives – to exist in a body that demands both revelation and disguise.
Living Between Worlds
Now, there’s a quiet way in which disabled people live as threshold beings.
We are always negotiating the border between visible and invisible, between what can be explained – and what can only be felt.
When I, like in last weeks post, say I can smell the snow coming weeks ahead,
people tend to laugh – untill it happens.
My body understands what the weather doesn’t yet say out loud.
It hums with storms before they form, trembles with the shifting of pressure.
It’s both inconvenient (at times) – and highly conventient at others.
Being disabled means returning to nature; we live by the signals of our flesh and bone – because we have to; the language of pain – because we have to; fatigue, scent and rhytm – because we have to. Adaption is the only way to get by.
And in some stange way; perhaps this is what frightens the rest of the world the most. Because we remind society of everything that is fragile – everything that is wild – everything that cannot be controlled.
«To be disabled is to haunt the able – bodied imagination – a mirror of what thet fear most: dependancy, vulnerability, and loss.»
– Silje Elsrud Yttervik
A Small Spell for the Living
The ghost season teaches us that there is beauty in what remains after the light retreats. In this dimness, we learn how to see differently – not with the denial of darkness, but with the devotion for what you still can see.
Remember, adaption is the only way to get by…
So tonight, light a candle for your ghosts – the lives you lost, the bodies that betrayed you – and the dreams that shifted its shape.
And thank them for what you learned from them.
Because, to live with such ghosts and not be afraid, is to know that you yourself is not what you’ve lost, but rather what survived the losing.
__
Further reading/ Watchlist:
– The Body in Pain by Elaine Scarry
– The Argonauts by Maggie Nelson
– Documentary: Crip Camp (Netflix) – for a glimpse of collective survival and joy.
– The Disabled God: Toward a Liberatory Theology of Disability by Nancy L Eiesland
Good Luck!
– Silje


