Illness – (Dis)Abled Creations

When you leave medical-treatment, there is something no one really preopares you for.
It is not illness itself, nor is it the routines you’ve come to recognize.
Its not even the mental and physical exhaustion of planning, packing, unpacking and resetting. It’s quite litterally coming home.

While I touched on this a few weeks back, and (tecnically) was preopared for it – the true impact of coming back home really hit me right in the face this week!

Because, while in treatment, everything has a structure to it. Your days are held, limits respected (or at the very least acknowledged!) – and when you need to, litterally laying in bed all day feels totally normal.
So in a way, this daily structure acts as a rhytm that moves around your body, instead of constantly pushing against it.

And then suddenly, you come home.
And from one day to the next, it’s as if the world expects you to fit back into a life that no longer fits you.
The structure is removed, and everyone (including yourself btw!) keeps pushing your body and your mind into a rhytm that doesnt sound right anymore.

When real life begins again

No matter how hard you try, coming home from medical rehabilitation is not a return to life as you know it. Instead, it is a negotiation between what you learned in treatment, and what real life demands of you.
You try yur best to hold on to the routines that helped you grow as a person, while also recognizing that your daily structure has completely changed. You may be aware of your limits, but real life is often messier. Much less predictable, not to mention less forgiving.

So as the days go by, you encounter expectations; spoken and unspoken. Things that needs to get done. Things you feel responsible for, even if no one explicitly asked you to carry said responsibility.
– And slowly, almost without noticing, you begin to strech yourself again.

Spring cleaning with a body that has limits

In my case, the diswasher broke about a week after my return (which I had nothing to do with, btw!) – but it was older, and it was bound to happen.
The fact that it happened at this particular time of the year, however – doesn’t exactly help!

Spring in Norway comes with its own structural rhytms; light returning, (most) people’s energy rising, and with it, the almost ritualistic need to clean, reset, and start fresh.
And I am definately a part of that!

At current, I live in a basement apartment in my parent’s house. I pay nothing to live here, and because of that – I feel a deep responsibility to contribute; especially through cleaning.

The thing is: my own space takes maybe five minutes to clean. I am very tidy, very structured – and I organize (litterally!) all of my belongings every season.

The rest of the house is another story all together. Due to this, cleaning – and especially Spring Cleaning becomes something else entirely. Its not a quick task to finish and complete, but an ongoing cycle, that no matter how much I do – seems to return within a few days.

So it leaves me either feeling constantly tired and irritated at the lack of organized, tidy spaces – or stressed out of my mind from trying to keep it organized and tidy!
And because I feel grateful to be able to live here – truly grateful – I keep doing it.

I do it, even when my body doesn’t quite have the capacity.
Even when I know – realistically, that I only have the energy to do it once a week.
And I keep doing it, even when it starts to take from the things I am trying to build on my own.

You can be grateful and still overwhelmed

Personally, I think this is the part many people (myself incluced) struggle to accept. Because, I am grateful – and I am overwhelmed!
Both are true!

I am grateful to have a place to live, and grateful for the support of my family through decades of balancing and navigating diseased/ disabled-realities, with life experience.
I am grateful that I don’t stand alone through this.

But I am also highly stressed;
Physically exhausted from trying to balance exersize, cleaning and basic health goals, and mentally drained from the constant awareness of what still needs to be done.

And perhaps, most importantly – I am fully aware that much of this pressure is internal. After all, no one is forcing me to clean beyond what I can manage. No one here (beyond myself!) is demanding perfection.
But gratitude, when it turns into obligations, can feel very heavy.

It can make you prioritize everything except yourself – and call it responsibility.

When helping starts to cost too much

As we keep pushing ourselves to keep going, there is a quiet line somewhere, between contributing and overextending.
And I think coming home has made that line very, very visible for me!

On the one hand, I want to help, give back, and be someone who contributes – yet on the other, I am also someone with a body and mind that has limits.
And when I ignore said limits – when I clean instead of resting, push instead of pacing – and on the whole, choose responsibility over sustainability – it can cost me!

It costs me stability, it affects my sleep, my stress levels rise – and it depletes my ability to focus on the things I enjoy doing; the things I am trying to build. Whether it be work opportunities, creative projects or even my future potential as a whole.
And this is not a fair trade.

What I am trying to learn now

If being in treatment taught me anything, it is this;
Structure is not something you leave behing when you go home. It is something you have to protect!
This means making choices that might feel uncomfortable;
cleaning less, resting more, allowing for things to be imperfect – and allowing myself to prioritize long-term stability, over short-term satisfaction.

It means accepting that contributing does not have to mean exhausting myself to the point of breaking. And that not doing so, to protect my own healt – is fully my own responsibility.

A small pause

So yesterday I chose something different, I took a small break.
A small break from cleaning, a break from writing – and just paused.
Instead I went to the hairdresser, and sat down while someone tended to my hair.
I brought a book to read, was served coffe and snacks – and a weight was lifted off my shoulders.
No cleaning. No fixing, and no adjusting.
Just sitting, reading and existing in my own space.
And maybe that, more than anything, is what coming home is really about;
refusing to return to what was – but slowly learning how to live,

differently than before.
—————————————

A bend in the road is not the end of the road…Unless you fail to make the turn. – Helen Keller

A small task for you, reader…

Before you go to bed tonight, take a moment and ask yourself;
– What is one thing I can let be good enough this week?

Then allow yourself – fully – to leave it there.
Remember, rebuilding a life is not about doing everything. It is about picking and choosing what really matters, and letting the rest wait…

– Silje

This week, I had several massive epileptic seizures. Not metaphorical ‘massive’ – or ‘bad days’ massive, but real – body-breaking, tonic-clonic seizures. These are the seizures I hate the most, and the weeks that I have several of them, well – quite frankly, it’s dangerous. They come, completely out of no-where, frying up my brain to the point where it takes several hours to get back from feeling slow and foggy. And then, in addition to feeling like your head is about to fall off, the muscles in your entire body is burning, joints may be out of place, bruises are forming everywhere – and there’s a constant question of whether the current bumps forming in your head warrants a trip to the emergency room, or if you can avoid it.

These elements after the fact, does not just go away once the seizure is over – no, it can last for days, as your body is re-mending. This time I was unable to sleep for an entire day, as I couldn’t turn my head, couldn’t use my right arm and couldn’t sleep on my back.

And while I sat there, aching – flickering and trying to reassemble myself, something else was happening as well. Norwegian Professor, Ragnar Torvik, in a widely circulated opinion-piece, decided to tell the Norwegian country that people like, well – me (that is, government-funded, disabled people below and around the age of 30) – we are simply lazy, and the most dangerous thing to happen to Norwegian society. His words circulated in (as far as I know) several major newspapers in Norway – I personally read it quite unintentionally in Bergens Tiende.

Now, it should be said, that while Torvik’s co-called «analysis» might have been aimed at systemic numbers, the impact is always deeply personal. Because, I never chose to be born, I never asked to be born with epilepsia, EDS and all other genetic impracticalities that is in my veins. In fact – I’ve worked for most of my life, pretending that these things were a non-factor, and what do you know – it only made me sicker!

Now, don’t get me wrong – are there people who don’t want to work, and who pretend to be ill? Sure.
Are the majority of government-funded under 30s just pretending-disability? ABSO-FREAKING-LUTELY-NOT!

Because, when you – as Torvik and his (many) followers paint a brush that wide, you hit real people. People who are already exhausted. People who’s been sick since birth! People who also know there’s nothing they can do to change the way they were born – but who still try every-day to to live in bodies that won’t cooperate, in a system that barely sees them.
And remember, those are the people who’s most likely to read-and care about these opinion-pieces. Because the few people who actually don’t wish to work, they couldn’t care less.

I didn’t ask to be born sick.
But here I am – living, enduring, adapting.
And now, apparantly – I am also being blamed.
___

However, let’s be clear about what’s actually happening here:
This isn’t an economic discussion. It’s a cultural story – one that is being written, once again about us, not with us.
And the narrative is tired:

«Young people don’t want to work!»
«Welfare is too generous.»
«They’re not really that sick.»

No data presented. No nuance. Just lazy scapegoating disguised as analysis.

As Alice Walker once said:
«The most common way people give up their power is by thinking they don’t have any.»

So here I am – reclaiming mine. With words. With truth. With the full, inconvenient weight of my disabled body, and the lived experience that follows along with it.
Because I may be tired, but I am not silent.

The point of the matter is as follows;
I have complex epilepsia.
It was not caused by poor choices, or lack of work ethic, or too much time!
It’s neurological – and most likely lifelong. I was born this way – and until the day I die, I will have to live this way.
And believe me, that is no-small-thing.

For me, it means, a couple-handfulls of medications at least twice a day – and another handful to get over all the side-effects.
It means pysiotheraphy 3 times a week, just to keep your body afloat, and regular visits to several doctors to make sure things are ok-ish.
It means not being allowed to drive a car, and the likelihood of being picked up by an ambulance every-time you’re on a buss or a train. It means not being able to take a shower or (even worse – a bath!) without someone watching you. It means using filtered-glasses daily, even just for going to the toilet. It means needing everything from 9-17 hours of sleep every day. It means the likelihood of not ever getting a job (regardless of how much you can work) – and no matter how ambisious you are, because todays job-market can’t handle someone with daily seizures.
And apparantly, it means being blamed for all bad decisions government(s) make, because Its so unfair that I should be payed for all the medications I. Need. To. Stay. Alive!

Now, I’ve spent years working to stay upright and engaged. To build a life that fits the rhytm of my body. Not because I gave up trying to surpass my disabilities, but because I knew I needed to take my disabilities into account If I wanted to survive. And I fought like hell to do so. Still do!

And yet – here I am, lumped in with imaginary, lazy people, treated as a burden by those who have no idea what it means to wake up in a body that constantly betray you – and an unopperative brain that is either going to give you seizures, or (if it were to be operated) likely make you blind.

Know that, we aren’t «outside of the workforce» because we want to be. We’re outside because the world – and workforce was designed without us in mind.
I know many people (myself included) who’ve been denied work, face-to-face because of disabilities. Even though this is illegal discrimination according to Norwegian Law. So my question is, why are we – the sick and disabled, blamed for not working, when (in most cases) the only reason we aren’t is because those payed to hire us, choose not to?
_____

You don’t know how much it costs me to take the buss. Or how long I need to recover from grocery shopping. You don’t see my physiotheraphy appointments, visits to the chiropractor, doctor, neurologist, the medical side-effects I deal with every day, knowing I’ve tried all the medications I can (litterally!). And you don’t see the shame of asking for help to pay my bills, in a society that punishes dependence.
As author Sunaura Taylor writes in Beasts of Burden:

«The able-bodied world cannot imagine our futures because it refuses to accept our present.»

Because, that’s the heart of it, isn’t it? They don’t want to see us. So they call us lazy instead. Because that’s easier than confronting the fact that some people can’t be ‘fixed’, and never needed to be.

___

However, all is not without hope. For example, this post is inspired by a beautifully sharp and honest Facebook post from a Norwegian legal-expert, which was later published in the paper Aftenposten: (https://www.aftenposten.no/meninger/debatt/i/GyWPkQ/arbeidslivet-maa-endres-hvis-flere-ufoere-skal-i-jobb)
His words are like oxygen i a room that has gone stale. It’s a reminder that we are not imagining this. That we’re not alone. That someone out there get’s it.

Because here’s the truth:
This has never been about policy. It’s about power.
It’s about who get’s to speak. And who get’s to exist without apology.

So, If you’re disabled and feeling crushed by this current rhetoric – I see you.
This is not your fault. This isn’t on you to fix. And you are not ‘lazy’ just for living in a body that demands care. Remember:

You are allowed to rest.
You are allowed to need help.
You are allowed to exist without having to prove your worth.
You are allowed to be sick without being a scapegoat.

Rest is not resignation. Support is not shameful. Your life – just as it is, is worthy of respect, protection and piece.
So if you have the energy; speak up! Share your story. Vote. Organize.
And if all you can do today is survive; like me yesterday; then you’ve already done more than they could ever understand.

And finally, to Professor Torvik, the ones who gave him platforms – and all the people who mindlessly follow the same rhetoric; You failed in your humanity.
Because I refuse to be a scapegoat to someone who doesn’t even understand that sickness can come to us all; from tiny babies to pensioneers. And thinking it’s easy to just ‘get a job’ for those of us who are sick, just illustrates how little you actually know.

– Silje

Stikkord: Illness

The Hardest Part Was Coming Home