Illness – Silje Elsrud Yttervik

When One Chapter Ends..

On kings, ceramics, changing bodies – and the strange feeling og becoming someone new

There are periods in life when something feels different, before you’re able to eloquently explain what it is. To me this has already happened several times throughout – and now, without knowing why, it is happening again.
Whatever the change is, nothing necessarily happens all at once. Nor does there need to be some sort of dramatic moment where you can point towards something and say; There! That was the beginning!

Sometimes, it is just a feeling…
Or a sense that something has shifted within or around you.
And simultaneously, as the shift becomes more apparant- the old version of your life becomes less relevant, as something new is quietly taking its place.

This has been my feeling lately.

Perhaps it is because so many little things in my life seem to be reflecting the same idea;
– A king has died.
– My creative work is changing.
– My relationship with my own body is changing.

And somewhere in the middle of it all, I have started to feel different too…
I don’t know exactly what I am becoming, YET –
But I have a strange feeling that I am becoming someone NEW.

A country entering a new chapter

The death of a national Monarch is a strange thing to experience for the first time.
When King Olav V of Norway died in 1991, my mother was still carrying me – thus I have no personal memory of what happened after.
I’ve seen photos, stories and read books, all illustrating how Norway went through a national transition – but I did not consciously experience it myself.

This time, however, with the death of King Harald V – I am!

And it has made me think about the Monarchy in ways I perhaps wouldn’t have otherwise. Because, I am not blind to the problems surrounding the Norwegian royal family. There are aspecs I disagree with, related people who’s choices I find deeply troubling, and (at times) despicable! And there are questions regarding privilige and responsibility that deserve to be discussed.

And yet, I am still in support of the monarchy.
That support does not come from the belief that being born into a royal family makes someone superior. It most certainly does not!
Instead, I support it because a Monarch, at least in its constitutional form, and born into the line of succession – knows from early childhood the extrordinary amount of responsibility they will one day inherit. And then they spend most of their lives getting preopared for it. Trained for it. And observe for it – for whenever the day comes.

So in a way, a future Monarch’s entire life is, in some sense, preparation for a role of duty they never chose.

And sure, there are many Norwegians who disagree with me. But I believe that becoming a republic would not automatically remove the human problems associated with having great power – it would simply create another system for deciding who recieves it. And as with most republics around the world (with few exeptions) – such a system would just attract the most power-hungry, people within the (already power hungry) political envoronment in the country.

And such a thought leaves me with a very important question. Because, what actually makes someone preopared to hold great power?
It is a question that societies should learn to answer more often. Because, political transitions; whether its from one monarch to the next – or from one president to the next, is not just about WHO comes next, but also about whether or not we have preopared them for WHAT comes next.

And to a certain extent, that is also something I have been thinking about in my own life.

Preoparing for something you cannot yet see

A few weeks ago, I spent three entire days doing ceramics.
It was amazing!
Tiring? – Insanely! But during those days, I managed to make everything I had planned for over 6 months. I worked with my hands until they almost turned red, concentrated on one thing; tiny area by tiny area – untill I reach that particularly satisfying moment when I realized;
I’ve actually finished!

Except, of course – I haven’t, not really.

Because, now all my pieces are neatly wrapped in plastic, left to dry.
Then, in a few weeks they will be fired.
Then I will scrub and glaze them in various ways,
and then they will be fired again.

And only after all-of-that, will I know exactly what I have made.

It’s probably my favourite thing about doing ceramics;
you can put an enormous amount of time, energy and intention into something, yet you still have to accept that you don’t completely control the outcome.
Instead, you do the process – and eventually you discover what it became.

Much like LIFE…
We expect transformation to to happen within the blink of an eye; as if everything suddenly changes all at once, and whosh! we are a new person entirely.

But after going through several of these transformations, I can confidently say
– It doesn’t work that way!

Sometimes, our ‘becoming’ have already changed long before we see and understand the shape of the finished ‘thing’.
Thus, I am not waiting for my ‘new life’ to suddenly arrive… Instead, I think I’ve already begun making it. I just haven’t seen the – (at current) finished version yet.

My body is changing too…

Another part og this new chapter of mine, has been surprisingly physical…
I recently spoke with my doctor about my ongoing weigh loss, and we agreed that it was time for me to slow down a bit.

This is not because anything is at fault – quite the opposite!
Instead; seizures, epi-meds and their ongoing side-effects set aside (no pun intended) – I feel fantastic at my current weight. And I‘ve managed to keep it pretty stable for a over 2 years. So naturally – now my focus has been shifting.
Instead of simply becoming smaller, I want to give my body time to build more muscle and become even stronger.
And for someone with my disabilities, this means eating a little more than what I am now used to, and adjusting some of my medication.

Which I find to be pretty symbolic at my current stage.

Because, for a long time, progress was measured by what I could loose.Whether it be;
– Weight.
– Medical symptoms.
– Limitations in my daily life.
And for many years, this was the groundwork for the old version of me;
as in «what may I gain by loosing this!»

Now however, I muct more often measure progress in relation to what I can build. Whether it be;
– Strength.
– Muscle.
– Skills.
– Creativity.
– Relationships (familial, platonic, and romantic).
– And a new form of confidence through having a more secure life.

And for someone like me, who’s illness and disabilities have been doing the groundwork for what is and isn’t possible, since I was a child – this new move feels incredibly freeing!
Because through this shift, I’ve realized that I don’t always have to move faster and do more; that sometimes progress also means knowing when to slow down, when to do less with more intention, and just let your body lead you towards the right direction.

Now, I do not claim to speak for everyone with disabilities. We are just as different in lives and abilities as everyone else in the world. But the tendency and outside encouragement to measure ourselves and our lives towards what we loose, is especially common in the West.
Whether it be through;
– Abilities we no longer have.
– Careers we can no longer pursue.
– Life plans we have to change.

And while these things can absolutely suck to deal with – because we do have to deal with them! Many of us find highly creative ways to work around our limits,instead…

The things we feel before we understand them

And then there are the less tangible things, too. Things that seem a bit strange, that don’t nesessarily fit into a spreadsheet or a medical chart.

As an example, I’ve always had very vivid dreams, and I often find them to be strangely connected to things happening around me.
Recently, I had a particularly intense dream where I was hunted down and about to be shot on a line ‘military style’. And as I heard the fall of my fellow soldiers, the ground shaking around me, I saw my entire life flash before me, and started to cry. Woke up with tears running down my face…

Now, as mentioned – I am quite used to intense dreams. But this one in particular, was one of those that didn’t immediately dissapear when I woke up, and that I still remember several days later, even if some of the details have begun to fade.

And then, a few days after the previous – the same night the Late Norwegian King died, I dreamt of his passing – and woke up, once again to a dream reflecting reality.

To be fair, I am not sitting here claiming that I can predict the future, or that I know the meaning of all my dreams – because I don’t!

It is perfectly possible that my unconscious brain simply picks up on a lot of clues, and processes them through my dreaming.

However, for those actually interested in things like astrology, my own ‘death-dream’ came following the full moon in my 12 house which is the end pont in astrology (from here, it goes back to the 1st.) Furthermore, the next new moon is in my 1st house – which within the astrological framework is associated with identity, beginnings and the self.
I do not expect everyone to believe that the moon dictates our lives. Many people think astrology in full is absolute crap. And they would be perfectly entiteled to their opinions.
But I would disagree.
For me, I see astrology as a form of explaining energy. And sometimes such symbolism can be useful withouth having to be scientifically casual.

Because I’ve had the feeling of something ending – and something else beginning for a while now. I don’t know why and I don’t know what, but I know I’ve never been wrong about this in the past. And so I choose to trust my instinct to lead me where I need to go.

Maybe I don’t need to know yet

In a way, I believe this is the hardest part about entering a new chapter in life. We want to know what it is, what it entails, and be able to make a percievable plan to reach our percieved destination.

But life rarely gives us that kind of clarity. Sometimes we simply know and understand that something is different…

I don’t know what this new version of me looks like yet; much like the final version of my ceramic projects are hidden until the final firing. In fact I don’t know what my creative projects in total will become – like I don’t know what Norway as a country will look like under its current monarch.

And perhaps that is the point.
We often wish for and desire clarity before we move forward with anything (I know I have!) But life rarely works that way.
Instead, we simply need to trust ourselves enough to make the next thing, get to the next stage, do the thing, make the desicion – and suddenly, often without noticing we look back and realise that we are already becoming her.

The next chapter

As I have mentioned, I do not yet know what comes next. Perhaps that is precicely why I can feel it coming without being able to identify it.
And during all this;
– A country has entered a new era.
– My ceramics are sitting quietly, waiting for their first firing.
– Like my body it is becoming stronger.
– And my creativity is changing shape.

So its no wonder, that in the midst of all this, I have begun feeling different too.
And who knows – maybe my dreams do mean something.
Or, maybe they don’t.
Maybe the moon has something to do with it.
And maybe it doesn’t.
I don’t know!

– But I do know this: something in me has already begun to move.
I don’t know what, and I don’t know where. But for once – I don’t think I need to.
Until then, I am simply here,
slowly – becoming
___________________________________________

A task for you, reader..

Before you move on to whatever comes next, take a moment and ask yourself;
«What in my life feels like its ending»?
And then:
«What might I already be creating, even if I don’t know what it’s becoming yet?»

And remember, you don’t always need to have an answer. Perhaps simply noticing the question is enough.

– Silje <3

The Workplace Was Never Really Built for Everybody – But It Could Be

Maybe I’m not bad at working.
Maybe I’m just bad at pretending to be able-bodied.

Throughout my entire life, there is a certain kind of advice I’ve heard over and over again, as if on constant repeat on the radio. The advice has not always been directed at me specifically – but rather, directed at everyone that don’t neatly fit into the tiny square box human beings (and their entire personalities) are supposed to fit intoo.

And I just happen to be one of them.

From a work-related point of view, it sounds something like this:
– Be more disiplined,
– Become more resilient,
– Take more responsibility for your career,
– Push through any obstacle,
– Just find a way.

And, don’t get me wrong – this is not nesessarily bad advice!
I am a firm believer in personal agency. I believe we all have a personal responsibility for the choices we make, to learn what we can do, and build the lives that makes sense for the people we are.

However – there is a massive problem with the way this advice is usually delivered.

First and foremost, when these types of advices is made, their deliveries assumes the issue is always the individual. That a person lacks these things in their daily lives, and that gaining it would settle everything for the better.
And that is just not the case!

Sometimes the problem at hand has nothing to do with the individual- and everything to do with the environment said individual is asked to function within.

And by marinating in these thoughs regarding my own life, I’ve come to a few conclutions throughout the years.
Conclusions like;
I lack neither disipline nor resilience in relation to work. But there are career obstacles and pathways (litterally) cut away from me, due to things completely out of my control.
Thus, I cannot take any responsibility for its prospects either.

Because, maybe its not that I am bad at working. Maybe I’m just bad at pretending to be able-bodied, in a system relying on pretence.
Which probably explains why I love the concept of remote work so much.

We have confused a ‘workplace model’
with the concept of work itself.

When most of us picture a «proper job» many of us picture roughly the same thing:
– Wake up
– Commute
– Arrive at workplace
– Stay there for X amount of hours,
– Attend meetings
– Answer messages
– Seem visibly productive
– Go home

– Do it again tomorrow…

Now, there is nothing inherently wrong with this type of model. And plenty of people thrive within it.

But it is only one model of working, yet we have all somehow allowed it to become ‘the measurement’ of whether someone is a «real» worker.
And the issues with this type of measurements are plenty – as it entails that:
– If you are able to be physically present for eight + hours you are committed.
– If you need to work from home you are difficult.
– If you need flexible hours, you lack disipline.
– If you need frequent breaks you lack resilience.
– If your health fluctuates, you aren’t reliable (if you’re even hired at all).

This matters!
Because – it means that we cannot solve the problem by just telling disabled people to try harder.

And if your body makes conventional employment impossible?
Well, then you are always the problem…
Except that employment outcomes for disabled people tell a very different story throughout the world…

The International Labour Organization’s research has found substantial disparities in employment, unemployment, and earnings between people with and withouth disabilities. Importantly to note, these differences cannot be adequately explained simply by education, experiences or occupational category. Many disabled people have higher, wanted educations. Many of these people have also had a variety of experiences before becoming disabled.
Instead, the research concludes that the barriers made for hiring are for the most part structural. This includes structural discrimination towards a disabled workforce, a structural lack of accomodation for a potential or already existing disabled worker- and a structural inhability to alter the organization of ‘work’ in itself.

What if we designed work differently?

Now, obviously – I am not claiming that we should make all and every workplace remote, just because I find remote work better for my physical disability and mental health prospects. That would be impossible.
Similarly, I do not think that remote work is necessarily the answer for everyone, disabled or not.
Certain types of work need workshops, some people thrive in offices – and some form of work obviously require a physical presence.

The point I am trying to make is much simpler:
– Why should one particular way of working be treated as the default, when potential workers don’t come in one particular configuration?

The ILO’s research has already recognize many of the things that can make employment more accesible. Their own guidance on workplace adjustments, for example, includes aspects like the modification of both working time, job content and work organizations – as well as both physical and tecnological adjustments. The EU similarly treats reasonable accomodations as an important part of enabeling people with disabilities to participate in employment.

So, perhaps we should stop thinking twice about accesibility as something we reluctantly bolt onto a workplace after a disabled person arrives – and instead treat accesibility as something embedded in the design of said work in the first place. That way it can be valuable to everyone when in need of it.
And there is a number of ways this can be done, by default.

Let «Presence» stop being the definition of productivity

If a task can be completed remotely, why must it necessarily happen in an office? This does not remove the potential for office work – it simply adds choices for each individual to make.
After all, if an employee produces exellent work from their kitchen table, does the work somehow become less valuable because their manager couldn’t see them do it?

I have never understood why visibility has become such a close relative of productivity. Unless it’s based on the need for control – and the lack of trust, In which I would say that the company has much bigger issues to handle.
After all, someone could spend eight hours in an office and accomplish very little (been there, done that!) – and someone else could spend four hours highly focused at home, and produce something exceptional (once again – been there, done that!)

The number of hours someone is visible to an office manager, should not be the same as the value they create.
Make Flexibility ordinary

For some disabled people, having flexibility in ones daily life is not a luxuary; it is the one thing that makes employment possible for them.
Perhaps someone works better later in the morning, or need various breaks throughout the day.
Perhaps they can even work for several days being excellent, before they need a quiet day to themselves.
Perhaps medication affects their energy, or they have regular hospital appointments (usually within work hours).
Perhaps their condition(s) – and with that their health, fluctuates during the seasons.
And perhaps they are still exceptional at their work!

A flexible workplace does not necessarily mean lowering ones expectations, it just means changing when and how various employers reach them.
Designing for fluctuating health-aspects

This is probably one of the things we still have remarably poor understanding of in society.
We often imagine poor health and disabilities, as something which is static in its nature;
– You have a wheelchair = you need a ramp; problem solved!
But many disabilities fluctuate…
Some days are good! Some days are bad! Most days are somewhere in between.
And sometimes, a person’s health can change dramatically, withouth warning.

For someone like me, for example, an epileptic seizure is not something I can scedule neatly in between meetings. Similarly, various seizures might come in the daily – and need various types of recovery.
There may be medication changes, leading to a severe change in physical and/ or mental health (for better or worse):
There may also be periods where my brain needs more rest than usual (as in up to 17 hours of sleep). This does not nesessarily mean that I am incapable of working all together.
It means, however – that my capacity is not identical every single day. And that said capacity might change through the year(s).

Personally, I think a good workplace should have mechanisms in place for temporary adjustments and recovery – instead of treating every change in health as evidence that someone is no longer employable.
Stop measuring endurance instead of contribution

In many ways, this might be my biggest issue with modern productivity culture when within the workspace. Because today, we highly admire, and look up to endurance, with little knowledge of needed restitution. AKA;
– How early someone wakes up
– How late they work
– The amount of meeting they attend, and email they respond to
– How little they sleep.
– And how much they can squeeze intoo a day.

And as someone who used to have a large #FOMO mindset in my late teens, early twenties (with nothing to show for it other than draining myself out of energy) it is completely nuts!

None of these ‘endurance’ metrics tell us anything about how valuable a person’s work is.
Because, on the one hand – the work could be exceptional.
On the other, it could be complete trash.

And I do not want to live in a world in which whoever can pretend to be A-OKAY for the longest takes the prize, completely regardless of the quality of their work, the quality of their health and the quality of their contribution.

Instead, I wish for a society where the quality of what someone contributes actually matters. And disabled people definately have valuable contributions. This could be through things like:
– Inside knowledge related to healtcare
– Out of the square box creativity and art
– Life experience similar to aging
– Ability to problem solve, do to a daily need to do so
– Entrepeneurial research, leadership and skills

Oftentimes these contributions come from simply looking at a problem from a different angle. And while our bodies might work differently, that does not mean that our minds, ideas or contribution is less valuable.

And then there is the question of accessibility

There is also another aspect not discussed enough;
Because – what if we stopped waiting around for people to become disabled before making workplaces accessible.
Clear communication is better for everyone. Good digital accessibility can help everyone. Quiet work environments can be better for everyone.
The possibility of remote participation can help everyone. Flexible possibilities within a predictable sceduling can help everyone. Ergonomic and healthcare possibilities can help everyone.

And when workplaces are designed with these variations in mind from the beginning, it results in less friction, less discrimination and more possible opportunities – for everyone!

The cost of exclusion

Furthermore, there is also something rather «strange» about the way we talk about accomodations.
We ask «how much will it cost to accomodate this employee?»
But as a society, we don’t ask «how much will it cost to exclude them?»

Most people want to participate something to the society they live in. But when the labour market (in practice) has put a ban on accomodation for certain marginalized groups, and discrimination towards disabled people are allowed to run wild, most of us feel left out.

And, as mentioned earlier – the ILO’s reasearch shows that the employment and wage gap experienced by disabled people, cannot simply be explained away by inexperiences in education, or actual labour experience. Many of us have plenty to offer. Instead, it is the various system(s) currently in place that are unable to recognize it.

And no,
I don’t believe we can do absolutely everything!

With all this in mind, I do still want to be really clear here. Because, I do not believe in the typical aspirational version of disability usually shown online, in which we are told «You can do anything if you believe it hard enough!».
No, I can’t!
That is not me trying to be edgy – it’s (in my case) a litteral, legal fact:
I cannot drive a car; The law prevents me from doing so, due to my epilepsy.
Similarly, a blind person cannot decide that their sight will return just because they want it to. And, someone paralyzed who uses a wheelchair cannot just decide to get up on their feet because they want it.

Can we work towards it (whatever it is) – if such training is possible and avalaibe?
– Yes.
Does said training automatically mean that we will succeed?
– No.

You can only control what you can control.
And at least to me, that is a much more empowering philosophy than pretending my limitations don’t exist.

To (once again) use myself as an example;
– I can control how I treat myself: (eat, sleeep, possible routines and hobbies). I can adapt and develop my skills, ask for help when in need of it. I can take a good look at my actual limitations, and consider which of these are worth pushing, and which are nessesary to just take into consideration.
So, from a more practical side:
1. I can not drive a car (yet), as I need to be without a seizure for at least a year before doing so. And I can not control my (at current), daily seizures.
2. My epilepsy reacts badly to caffeine and alcohol, and my seizures gets worse from it.
I can control what i consume, so that my seizures don’t get unessesarily worse.

This is personal agency. And while my limitations are there, I still believe it’s possible to build a meaningful life, by just building around them.

Perhaps independence isn’t the goal

In a way, this is also why I’ve become Increasingly out of it, in relation to how we speak about independence.
We are told from childhood that beeing successful means needing nobody. Doing everything ourselves. Working full time, living alone and never asking for help.
But human beings were never actually degined that way. We were created interdependent; we need other people.
The difference is that to many disabled people that reality is made much more visible than to others, from a relatively young age.

The Workplace was never really built for everybody

As we are approaching the end of this, I want to preface that I don’t want a future where disabled people are «graciously permitted» to participate in a workplace designed for somebody else.
Instead,
I want something much more ambitious!
Workplaces designed with human variation in mind. A place where fluctuating energy, brainchemistry, health and the general circumstances of life – varies.
As all lives do.

– I want remote work to be an option in professions that doesn’t require office-attendance.
– I want flexibility in scedules to be seen as a working tool rather than a moral failing.
– I want accomodations to be a normal part of work etiquette, rather than a reason for humiliation and discrimination within the workforce
– I want productivity to mean contribution instead of endurance.

And more than anything, I want becoming disabled to no longer automatically mean loosing your career and livelihood.
And for those of us disabled to be able to proudly say «This is what my body can do. These are the conditions I need. And here is what I can contribute» – and to say it with a spine.

The problem has never been that disabled people can’t work. It’s that we can’t work inside workspaces designed without us in mind.

BUT if we were to re-design it, perhaps the same workspaces that were never built for everyone, could become one that is!

__________________________
A small task for you

This week, think about your own ideal way of working.
Not the job title – or even the salary attached to it.
Not even what society claims a «sucessful career» should look like.

Instead ask;
– What conditions would allow me to do my best work?
Write down the first three that comes to mind.
– What would have to change – in me, my workplace or in society, for those conditions to become possible?

You may discover that the life you want isn’t as impossible as you once thought!

– Silje <3

The Life You Want May Still Exist If You Let It

On disability, ambition, and becoming the person you were meant to be

There is an assumption, and a created narrative I’ve encountered again and again throughout my life.
The assumption is simple:
«Becoming disabled means losing your future».

This type of narrative is not meant litteraly so, but in a practical sense, through time; it’s as if piece by piece,the life you envisioned dissapears.
It might be the career you imagined, or the independence you wished for,
the relationships you dreamt about, or even the person you imagined yourself becoming.

And from my own personal experience;
if you spend enough time around illness, hospitals, and within a variety of social systems – you begin to hear this assumption everywhere.

Sometimes is stands out in the open hallway amongst patients or medical-workers. At other times it’s wispered quietly, disguised as concern between your family, or your friends.

And sometimes; narrated as a helpless fact and a breath of realism, it might come from your own internal voice.

But it is a narrative I no longer believe in.

Instead, lately – I’ve been rendering on a different kind of question.
Because, what if the life I want still exist, If only I’d let it?
Not untouched by illness. Nor free from reality. But still there – and still possible.

And on that note – if my dream life still exist, how would I make it?

My limitations are real. But they do not get to decide who I become.»
– Silje Elsrud Yttervik

Today, I think one of the greatest tradegies many disabled people experience is not illness itself.
Rather, it is the gradual loss of imagination, as we stop allowing ourselves (intentionally or unintentionally)
to dream.

And this is not because we no longer want things in our lives. But because we begin to asssume that we’ll never get them.
Thus, the pain becomes too big – and the consistent dissapointment too substantial.
So we just… lose all hope.
Because hope feels too dangerous.

So we lower our expectations in life…

Then lower them again…

And lower them once more…

Untill we eventually stop asking for what we want altogether.

Instead, we start asking for what seems realistic.
And while realism certainly has its place, I am not convinced it should be allowed to run our entire lives.

Because, truth be told, everyone has limits!

Some are financial, others are social. Some limits are physical – some are psychological.

The difference is that disabled people often see our limits more clearly than everyone else.
Because they are (often) highly visible.
Often heavily documented and measured.
Sometimes even diagnosed

And because our limits are easier to identify, society often mistakes them for the entirety of who we are.

But remember, a limitation is not an identity!
It is simply a condition that must be worked around.

For a very long time, I believed that becoming the woman that I wanted to become, I had to wait for society to give me some sort of permission to do so;
– permission through employment
– permission through approval
– permission through systems that recognize my value through the variety of life experiences I have, that are both rare and unusual.

But the older I get, the less interested I become in waiting.
Because, while these systems play a part – they do not own my imagination.
Nor do they get a say in ME reaching MY goals.
And they certanly do not own my future!

And perhaps the most important part is that, this does not mean ignoring reality.
I am not in any way, shape or form interested in pretending that illness does not exist.
My epilepsy exists. My limitations exists. And my health matters to me, deeply.

But there is a difference between building a life regardless of your limitations, and building a life with limitations in mind.

The first denies reality. The second respects it. And for me, this is where my own freedom of imagination lives.
Not in pretending we have no limitations, but in refusing to let those limitations become the only thing that define us.

So,
my plan moving forward is surprisingly simple.
I am going to continue becoming the woman I want to become.
Not despite my disability, nor regardless of it – but rather alongside it.

I will take my limitations intoo account. Adapt when necessary.
Rest when rest is needed, and ask for help when I have to.
And just… continue.

Because, I am no longer interested in spending my life proving that I too am worthy of big dreams and ambitions.

I am interested in pursuing them…

En kvinne med langt hår sitter ved et skrivebord med en bærbar PC. Hun ser direkte mot kameraet og skriver notater. I bakgrunnen er det rammer med sertifikater og en utsikt over byen. Bordet har bøker om personlig merkevarebygging og en kopp med motiverende tekst. — «Silje pursuing her dreams» – Made with the help of AI!

As such, maybe that is the real lesson disability teaches us.
Not that our lives are over when illness festers,
but rather that everything we do in life becomes highly intentional.

Every choice we make matters more,
every goal we reach matters more – and every relationship; (romantic or platonic) that we invest time and energy intoo, matters more.

Because, when limitations are real and highly visible, we stop taking possibilities for granted!

_________________

A small task for you, reader…

Ask yourself;
«If I stopped asking for permission, what kind of life would I want to live?»
Consider your own limitations, big and small – and consider potential steps you could take around them.

Shut down the assumptions, reframe the narrative.
Be creative!

Then, decide on one small step towards your dreams – and commit to doing it within a week!

And just… continue.

– Silje

The Day That Got Away

A story on mead, migraines – and learning that joy needs a rest too.

Soooo first off, for as long as I can remember, Mondays have always set the tone for the current week. And this week, my Monday was packed with plans.
Good Plans! – You know, the ones that sort of filled up my notebooks and planners – making me feel productive before the week even began.

Instead, this Monday, I spent the entire day in bed.

A massive migraine had settled into my head the night before, at the same time as my body was dealing with the heavy stomac pains that comes along with my other «joys» of menstruating.
Now, mind you – neither of these things are new to me!
But it is especially painful when it arrives early on in the night, as it results in waking up in pain every hour – if I’m lucky enough to sleep at all, that is.

So it started with me skipping my physiotheraphy workout. And while I hate skipping it, I felt it was the most responsible thing to do. If my migraine weren’t enough, the fact that I had barely slept, and was on a new hormonal cycle was kind of like a perfect concoction for me getting a massive seizure. So I just stayed in bed. At some point during the day I ate something, then eventually fell asleep.

And somewhere between wanting to stop feeling aweful and wanting to get things done, the day quietly slipped away from me.

For a while I felt frustrated. Kept thinking about everything I had intended to do; everything I still hadn’t done – that would now have to wait.

But then, as I lay there staring at the ceiling, I realized something.
This Monday (it’s currently Tuesday), did not happen in isolation.

In fact, only a few days earlier, I had spent an entire weekend doing things I genuinely love.

On Thurday, my family and I sat at the dinner table playing cards and talking about plans for the summer.

On Friday, some friends and I gathered to make mead. I don’t know how many have ever tried it before, but there is something strangely satisfying about mixing old traditions with good conversation – in anticipation of something that will not be ready for months.

«Making Mead»
Image by Silje Elsrud Yttervik

Truly, making mead – like the brewing of ale or the production of wine, teaches patience in a way modern life rarely does.

Then, the following day I met up with my girlfriends for a prosecco lunch, celebrating the hostessess’ birthday.
As usual there was laughter, stories, and the kind of conversations that leave you feeling lighter than once you arrive. Some of my girlfriends brought their babies, others were highly pregnant.

For three days straight I spent my time feeling happy and having fun with other people I love and cherish.

But in a way – perhaps that was the problem. Not the love, the fun and the happiness, mind you – but the fact that all of these things also costs energy.

For many of us (disabled or not), energy is not a limitless resource. It is a budget.
Except, unlike with money, you cannot just borrow more when you run out.

Looking back at it now, I realized that despite packing my weekend with things that filled my heart, I forgot to leave enough room for recovery afterwards.
Because I’d spent time with people, talked, laughed, travelled, socialized and enjoyed myself immensely.
And afterwards, my body sent me the invoice.

This is not to say that I did anything wrong!
But even joyfyl, beautiful things require energy. And I think this is one of the strangest parts of living with illness.

Because, the word often talks about rest, as if it’s something you earn after hard work. But for many disabled people, rest is not a reward.
Rather, it is a form of maintenance that might lead to massive consequences when you attempt to skip it.

Thus, sometimes the most important thing we can do, is to scedule recovery the same way we sedule everything else.

Lately, I have realized that I need at least two days each week where very little is expected of me.
This means;
– days without appointments
– without social obligations
– without projects

Days where I can simply exist.
As my body functions ten times better when I respects it’s limits rather than argue against them.

So, as today is Tuesday – I can easily say that yesterday was not the productive Monday I had planned. But it can still function as a practical one.
As a reminder that a good life is not built only from the things we are able to do – but also from the space in between them, as we learn who we are. And what we need.

Sometimes the most productive thing a disabled body can do, is to survive the day withouth making tomorrow even worse.
– Silje Elsrud Yttervik

______________________________________

A small task for you, reader…

This week, write down one thing that made you smile.
This does not have to be a productive thing,
nor an impressive thing.
Just something you smiled at 🙂

Then take the time to remind yourself;

A good life is built from moments, not milestones.

– Silje

The Beauty of a «Smaller» Life

The quiet joy of building a life that fits you

So, I wrote about a similar subject a few weeks ago, but really wanted to approach it again – from a slightly different point of view. Because, I find that there is a strange assumption in modern society, that lives worth living must always be LARGE;
Large careers, large social circles, large ambitions, large houses, and large scedules.
As if you’re always expanding, always moving – and always, aaaalways visible to everyone and everything – always!

And, in that same aspect; if your life ever becomes smaller than this, or moves a bit slower – and in general seem more contained, people often assume that something is, well – wrong.

But, I am beginning to think that maybe the opposite is true.
Because, my life is not small, not really – it’s just built around different measurements all together.
My life, built for me and my needs, are planned around adaptation, and especially the adaptation of unpredictability. Because my health can – and often have changed suddenly, and withouth warning.

And, while it is true that this kind of life requires a certain limitation to it, it also creates something else:

A profound appreciation for even the most miniscule forms of happiness!

Especially during the last few years, I have begun to believe that many disabled people experience joy a bit differently than the rest of society.
This is not necessarily because our happiness is lesser than others’s – but because we have become deeply aware of how fragile ordinary life actually can be.

So, simple things like a peaceful morning, a good cup of coffee, a clean, fresh and organized apartment, a good conversation, a creative evening before bed. – Or, in my case, any and all (positive!) changes to a general routine, can make me feel like I’m at the top of the world!

These sort of things are often treated as insignificant by the outside world, so they stop noticing when it happens. But when your body and mind is unpredictable, ordinary peace and ordinary happiness can quickly become extraordinary!

And perhaps that is why ‘disabled joy’ just to put a name to it, can feel so intense at times. Because we notice all the little things many people rush past.

«When one door of happiness closes, another opens.»
– Helen Keller/
@The American Foundation for the Blind

I should preface by making it clear that I do not nesessarily think that romantizicing illness is the way to go. Nor do I think that the loss of something due to illness should automatically become a form of inspiration.

I do however think it is important to recognize that chronic /physical- or mental diseases in life, does change the way we see things.
And in just grieving the life we imagined, we fail to notice the new, simpler forms of happiness growing beside- and in front of us.

For a long time, I though happiness existed somewhere in the future.
In becoming healthier, more independent, more productive – and just more ‘normal’. But I am healthier now in my mid 30’s than I’ve ever been. 10 years ago I was more independent than I am today, and 20 years ago I was definately more productive.
But my god, I can swear that I have never been ‘normal’ xD!

So instead, the older I get, the more I realize that ‘being happy’ is much less dramatic than what my younger self assumed.

Sometimes, it is simply building a life that your body can survive in as it is;
with enough energy, and room to breathe.
And strangely enough that simple adjustment in the way I see happiness, have not in any way made my own life emptier – in many ways it has made if fuller.

Disabled joy is still joy

I also think disabled people are often spoken about only through our suffering. (Which I too am a part of!) And this is not fair.
Because the way we are spoken about, (and at times speak about ourselves), it would seem as if our lives are automatically tragic. As if our pain cancels out all the beauty in the world.
But this is of course not the case!
Because, disabled people fall in love, create art, laugh at stupid jokes and become obsessed with books and TV shows as much as the next person.
We decorate out homes to our tastes and our advantage, drink coffe with friends and dream about our future.

We experience beauty the same way everyone else does. Somethimes even more so than other people.
Because, when you understand how quickly life can change, joy and happiness stops feeling guaranteed
– and instead starts feeling truly precious.

Another thing is that it is something deeply humane about creating a life that fits the person supposed to live in it.
And many disabled people become incredibly intentional about their surroundings.
Whether it be specific routines, lightening, blankets, specifically easy to hold mugs, a bookshelf full of creative art, musical equitment or specific decorations.
Whatever it is, I do not think this is a superficial element – not really.
Instead I think that when your body feels unstable and difficult to control, creating a form of external stability becomes a form of peace .

«The world is full of suffering, but it is also full of the overcoming of it.»
– Helen Keller
@Wikiquote.org

Modern research on well-being also increasingly suggests that happiness is not built only through achievement, but through meaning, social conncection, stability and environments that support our needs.
(arXiv; Linguistic Reflexes of Well-Being and Happiness in Echo).

And perhaps disabled people just understand this fact earlier than most, as we are often forced to ask ourselves a question many people avoid:
– What would actually makes my life feel livable?
Not impressive, nor profitable. Not even socially admired,
but livable.

For me, that means living in a stable home, where I can be financially relaxed. It means sleeping enough (between 10-12 hours ), and have a clear, relaxed routine in the morning and in the evening, as I very easily get stressed. It means committing time to write and to other forms of creativity (mostly every week) to feel a sense of meaning in my days, and to workout to keep growing strong. It also means leaving enough time to eat, to hang out with friends every month, and enough time to just sit with my thoughts. And lastly, it means opening up space for a monthly spark of ‘flexible form of happiness’ come whatever may.

So sure, from the outside my life may not seem very big or impressive.
It is slower than many other’s , with far less noise and far less friction.
But it is carefully structured to function for ME.
The amount of peace I need, the ability to be as creative as I can manage. To fill it with all kinds of beauty and meaning that makes sense to me, even if no one else gets it.

It is also filled with joy; small and big, wide and narrow. And to me that matters much more than living big just for the sake of it, ever could…

___________________________

A small task for you, reader…
Tonight, try to notics one small thing that genuinely made your day better:
– A drink?
– A routine?
– A moment of stillness?
– A clean room?
– A good text message?
– A book?
– Or a soft blanket?

Then ask yourself;
«What makes this insignificant? What would make it not so?».

Maybe happiness is not always found in building a bigger life.
Maybe sometimes, it is found in building one that fits your own size!

– Silje

The Lie of Disabled Equality

On contradiction, exclusions, and the truths society avoids to talk about

Society refuses to fully include disabled people, while simultaneously resenting the cost of excluding us.
– Silje Elsrud Yttervik

From my point of view, there is something deeply contradictory in the way modern society treats disabled people. On the one hand: we are told that all humans deserve dignity. That discrimination is wrong, that modern society values inclusion, and that all human lives matter equally.

On the other hand: the systems modern societies have built for their citizens, tell a very different story.
Within these systems – we; the disabled, are treated as massive burdens from the moment we require support.

And this arises many questions within me. Like:

why are disabled accomodations viewed as such an inconvenience?
Why are disabled workers so often excluded from the workforce, despite laws that strictly forbids said exclusion?
Why are those of us recieving disability support spoken about, as if we are stealing from everyone else?

And perhaps most importantly:
Why -and how are disabled people expected to survive independently, in a system that actively refuse to include us?

The Impossible contradiction

If one takes a second to really think about these things, it becoms pretty obvious that society often demands two completely incompatible things from those of us who are disabled:
1) Be independent.
2) Accept that no one wants to hire you for pay, and that no one wants to provide you with livable means.

And when those two realities clash, it is us – the disabled, who are blamed for the outcome.
As if our illnesses, disabilities and/or cognitive dysfunctions, are moral failures.
And, as if being born different from the ‘assumed’ standard, is somehow a personal crime.

And unfortionately, more than anything, these types of impossible contradictions mirrors a society in which (generally speaking), disabled lives have no value on their own – and the remaining population lacks the integrity to clearly admit it.

What I want my work to say

If there is one truth I want my own work to cover, it is this:
Disabled people are not lacking in value – it is the systems surrounding us that are lacking in imagination.
Contribution does not only exist in the forms society currently rewards.
Not everyone can survive inside rigid, square – fitted structures, built on endless fake energy, social performance and constant productivity.

But that does not mean we have nothing to offer!

Some people contribute through care. Some through creativity. Others through things like writing, thinking, organizing, supporting, observing, teaching, or just surviving .

And many disabled people spend their entire lives adapting in ways that require the most extraordinary resillience – only for that resillience to be ignored, because it doesn’t fit traditional systems of labour.

The questions society refuses to answer

There is also a much darker truth underneath all of this.
Because, at some point this contradiction becomes impossible to ignore.

Now, I do not think most people consciously hate disabled people. I do, however believe that many people lack critical thinking skills, and that many of these people are – simply put, deeply uncomfortable with us.
Because remember; independence is fragile. Health is temporary, And anyone can become dependent, at any moment. And instead of confronting this fear, society at large tends to project it onto others, and we – the disabled, remind people of this fact.

Which in itself opens an even worse thinking process…
Because, if society acts as if disabled people are fundamentally unworthy of support… then what exactly is the only logical alternative?
That is the question most people rarely wish to follow to it’s conclusion.

Because,
If a society refuses to give disabled people a sustainable form of paid work.
And people within said society believes disabled people should not recieve support.
And if survival requires this support in the form of money, housing, healthcare, food and stability…
Then what exactly is the intended outcome for the disabled people who cannot survive independently without it?

I mean, there are only a limitied number of logical conclutions to this.
Either:

Society must meaningfully accomodate disabled existence
accept that human value is not tied to their ability
and create systems where disabled people can survive with dignity

OR
Society must admit that it is comfortable allowing disabled people to dissapear quietly through death, poverty, neglect, institutionalization, abandonment, or selective prevention before birth.

Now, I do want to preface that I DO NOT want this to happen!
But, from a current point of view, this is the only logical conclution.
WHICH SOUNDS INSANE?!

And what hurts the most as a fellow disabled person, is not that disabled people don’t understand this logic – it is that many of us understand it perfectly, while the society around us insist on pretending otherwise.

What i actually want

Personally, I do not want any pity. And I do not want forced inspiration narratives. What I do want from people, however, is Integrity. I want honesty.
I want disabled people to become a natural part of society. Not as a symbol of something bad that could happen to anyone – but as people, point blank.

And if modern society, and the members of said society cannot provide that inclusion, then at least have the integrity to openly admit it!
Instead of pretending that equality already exist – admit that it doesn’t.

Because pretending disabled people are fully included while systemically excluding us, is just another form of cruel ignorance.
__________________________________________________

A small task for you, reader…

The next time you hear someone complain about disabled people recieving support, pause for a moment and ask yourself:

«what realistic alternative is actually being offered?»
If people cannot access work, cannot access pay, stability, and cannot access accommodation.
– What exactly are they expected to do?

Sometimes, in my opinion, the most uncomfortable questions, reveals the clearest truths.

– Silje

Your Life Does Not Have to Be Big to Be Meaningful

On grief, ordinary lives, and learning to build a life that actually fits you

I think one of the hardest things about illness is not always the pain or unpredictability itself.
Sometimes, it is the quiet loss of scale. The realization that your life may become smaller, move slower and be more contained than you once imagined.

Whether we personally agree with it or not, we live in a world currently obsessed with ambition and visibility. And the- (to me at least) unfortionate practice that constant movement, whether foreward or backwards, is the only way to go.

Part of this we are taught from childhood, that meaningful lives are (always) big; filled with travel, with sucess, with movement, noise, achievement, and constant expansion.
So- what happens when your own body no longer allows you to expand? When survival itself requires limitation?

According to most of the popular movies I watched growing up, those incapable of living big – and incapable of expansion, would simply roll over and die. That way we the viewers, wouldn’t have to ask questions about sustainability and practicality – for no one in need of those explanaitions were alive anyway.

So for a long time in my teenage years and early adulthood, I though the «expansion» of my disability, was me being punished for not following ‘normal’ life protocol. I travelled instead of studying, then studied instead of settling, and as my disability got worse, I didn’t roll over, give up or give in to being treated poorly.
Don’t get me wrong – I was still grieving, just not what I was preopared for.
I though I was grieving a future that illness had taken from me;
– Careers I had imagined
– Energy I had assumed was obvious
– And the version of myself I thought I was destined to become.

Over time, however, I have started to realize something rather interesting;
that this person never really existed.
Instead, she was an idea; a projection of me, built almost entirely around what society values; like productivity, independence, high achievement and speed.

Because, when the truth is to be told, I do not actually want a life that destroys me in the process of sustaining itself «according to social protocol». And I do not want a career that I cannot control.

Now, don’t get me wrong; parts of said dream were real.
I have always been ambitious, I have always had many ideas and many creative suggestions in life. But – I have also, always been slow in doing things. And done said things, built entirely around an energy that constantly wanders up and down.
And because of this, I do not want a life so large that I cannot rest inside it. Or so large that I cannot be there for my family or my friends.

From a disabled person’s perspective, I think this is something we are (litterally) forced to understand earlier than most people.
We learn, often painfully so, that life has to be meaningful without being massive.
That joy can exist in very small spaces.
Through the work of quiet apartments, or stable routines. Through books stacked beside your bed, or a warm morning coffe/ tea. Through writing a blog – (Hello! xD) and doing so at your own pace, or even just creating something meaningful from your own home.

Many people dismiss these things as «small» – and therefore pointless or unessecary. But every decade, a bunch of books, education and health-related research point to these small things as the foundation of everything else positive in your life.
And when I look at the people I know, who’s lives are the fullest,and happiest – they’re most often built on these tiny, practical daily elements.

The exhausting expectation of being extraordinary

Despite this, many societies rarely allows disabled people to simply exist normally.
Instead, we are expected to be inspirational. Expected to be resilient – and, more than anything, expected to be both positive and productive, on line with everyone else.
Not to mention, endlessly grateful – for being allowed to be alive!

Now, I am not claiming that disabled people can’t be these things! Some are, some aren’t – we are as different as everyone else in the world after all.
But it seems as if ordinary ‘disabled existence’ is not enough on its own. As if we must constantly prove that our lives still hold value.

However, the more I think about it, the more I begin to think there is something deeply cruel in these expectations.
Because, it teaches disabled people, regardless of who they are – that in order to step out of ‘unjust lines’ (which is nessesary for human evolution), we must first earn it. That acting slowly must be justified. That our lives are only respectable of they overcome themselves.

And perhaps that is why so many of us struggle to accept quieter lives – not because they are bad, but because we have been taught to see them as less worthy.

Photo by <a href="https://unsplash.com/@mischievous_penguins?utm_source=unsplash&utm_medium=referral&utm_content=creditCopyText">Casey Horner</a> on <a href="https://unsplash.com/photos/low-angle-photography-of-trees-at-daytime-4rDCa5hBlCs?utm_source=unsplash&utm_medium=referral&utm_content=creditCopyText">Unsplash</a> — Image by: Casey Horner @Unsplash

Why our spaces matter so much

I also think this is why many disabled people become deeply attached to their environments. To our routines, carefully organized spaces, comforting objects – lightening, textures, books and decoration (or lack thereof!). To some this is simply practical: a wheelchair needs easy space to get around, a blind person needs to know where to find things, a light sensitive person needs less bright lights, and a person with easily broken joints need softer spaces in their environments.

From the outside I bet my own space can seem excessively organized, or unessesarily decorated; but to me, a calm and quiet space is very important in order to rest. When your body is unpredictable, your closest environment becomes a form of stability. It becomes something you can shape and change at your own will – when everything else seems out of your control.

There is a reason I bought certain decorations, technology and familiar items with me to medical rehabilitation: the way some people bring coffee machines, blankets, candles or favourite mugs.
They are things than can ground you to a new environment, with the use of an old routine. They remind us that we are people – not just patients. That our lives belong to us.

And maybe that is part of what I am slowly learning now; that a meaningful life does not have to look impressive from the outside.
It does not need to be fast, or loud, or endlessly productive.

It just have to be livable.

A life where your body can breathe, your nervous system is not constantlty at war with your surroundings, and where ambition exists alongside rest, instead of replacing it entirely.

And when one thinks about it, perhaps that kind of life is not small at all.

____________________________________

A task for you, reader!

Tonight, look around the space you live in and ask yourself
«What part og this space makes me feel the most grounded; the most like myself?»

Maybe it’s something as small as a chair, a blanket, a shelf of books, a routine you follow, or even a calm corner…

Whatever it is, allow yourself to appreciate it as a beautiful part of the life you’re building.
Because, whether quiet or loud, big or small; all lives deserves beauty!

– Silje

The Hardest Part Was Coming Home

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

Lazy? No – but born disabled, and tired of being your scapegoat!

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