«On re-entering the hospital, and the kind of progress no one sees»
For myself, and for many people I know – there’s a particular kind of silence that arrives when you realize you’re going back to the hospital.
It’s not particularly ‘good’ or particularly ‘bad’ – it’s just there; like a quiet recalibration.
In able-bodied culture, hospital admissions are most often framed as setbacks. Or as proof that something went wrong; evidence that you failed to manage your life correctly. For those of us with physical/ chronic disabilities, however – this is not the case.
Sure, it might be that way for some of us, people are different after all – but I’d go as far as to say that for the vast majority of disabled people, hospital admissions is almost like a form of necessary maintenance strategy…
And later this month, this type of maintenence is coming back to me.
Now, I’ve already been admitted to the hospital many times in my life, and probably will be again, several more – but it always makes me feel hopefull yet anxious in the days and weeks ahead. Hopeful, that my doctors might finally find a way to make my epilepsy less apparent in my daily life, and anxious about collapsing my entire life again, without knowing how long. If this sounds too excessive – the last time I was admitted to a hospital, I ended up being there for almost 3 years!
This time I am being admitted to a specialist hospital that I’ve never been to before, and will probably be staying for several weeks, at the least.
Of couse, while this in itself is not the end of anything I’ve already built in my life, it does require a heavy pause from it.
And pauses, in a world seemingly obsessed with gaining momentum, is deeply misunderstood.
Progress is not linear when your body isn’t either
Disabled progress does not look like a straight upward line. Instead it loops, stalls, contracts or expands – moving in spirals rather than ladders.
And because of that; sometimes, the most responsible thing you can do is to step out of daily life and hand parts of your survival back to professionals – as maintenance without them becomes unsustainable.
Hospitals are often framed as places of last resort. And in many ways they are. Not because diabled people wait too long to mainenance, but because support is rarely offered before a crisis. So, while going back to a specialist ward can be proof that I’m still here, going for it – I won’t lie and say I’m not scared. Scared that I’ll get as ‘drugged up’ by wrong meds as I got the last time, scared that I’ll gain a bunch of weight without my usual training group, or scared that I won’t be able to come back to my daily life once finished.
The invisible logistics of being «paused»
While I am very happy I was able to be admittet this early on in the year, I’d be lying if I said it was all good, always. Because it’s not. What people rarely see, is that hospital admmissions don’t begin on admission day itself.
Instead, they often begin weeks earlier, with things to organize, meetings to move, appointments that must be cancelled or postponed.
Fort some people, finances must be adjusted; – and the packing! The packing for all the things you might need and want, all the while fearing that the routines you’ve worked hard to build will just fall flat; and make you build them again.
Being treated is not the same as being absent
One of the hardest things about re-entering the hospital, is how quickly disabled people are erased from public life.
As if we’re dissapearing from timelines , and conversations about the future, just because the systems around you don’t know what to do about people who need ongoing care – while also having ongoing ambitions.
But being absent from public productivity, is (luckily enough!) not the same as being absent from meaning.
So while I might be paused in one sense; as an example, I don’t know whether I’ll have enough time to write in my blog. However, other things will still continue in the background; ideas fermenting, recilience recalibrating, boundaries changing – hopefully turning me intoo something even stronger than before.
What I want ot say before I go
This is not me starting over – I’m just continuing down a different path, tending to the conditions that makes continuation possible.
If you yourself is someone preoparing for an(other) admission, a round of treatment, a pause you didn’t ask for – or anything of the sort, remember – we’ve all done it before, we can do it again!
– Silje