Stikkord: Disability

Maps of Happiness: On the Hidden Geographies of Life

A reflection on the places, people and versions of ourselves that guide us towards the existence of happiness.

What if happiness is not a destination, but a geograpical line we reach through time?


The life I am still building

When we are born, there is a ‘map’ most of us are handed before we are old enough to question it. Depending on who, what and where we are, said map has roads supposedly leading to sucess;
Through independence, a career, a family and good achievements.
Some routes are wide and well paved, while others are narrow, expensive – or difficult to find all together.
And somewhere along, we are told that following these roads – in the right order, we will arrive at a good and happy life; where we are expected to have become someone.

But what happens when these maps are drawn out without the variation of human bodies in mind?

For many disabled people like myself, the road to ambition stops at a huge roadblock, not yet able to let us go any further. In similar fashion, the road towards independence makes a ‘not-so-small’ detour: towards hospitals, medications, surgeries, lack of job-opportunities, and various changes in what becomes accessible to you.

Our energies are not infinite.
You might have made big plans, but in a body that does not cooperate with them.

These roadblocks are not few – and have a tendency to infect every-single-are of our lives…
– When you want to create something meaningful, but the world keeps asking you to prove that you deserve the opportunity to do so.
– When said opportunity, for no apparent logical reason, requires you to go beyond what your body is capable of.
– And then when shit hits the fan, as said roadblock appears before more and more people, it is those who’ve always been excluded that gets the blame.



The map we were given

As a very ambitious – AND very disabled person, I have spent my entire life so far pushing my body towards the absolute edge of its limits – and paying the price for it in return.
This means learning what I can, and what I cannot do. it also means learning the language of hospital wards, the mathematics of my energy – and the strange geography of a world that does not always make room for people like me.
But fear not! Because my route is not yet finished!

There is nothing inherently wrong with wanting a career, a home, financial independence, a family – or the satisfaction of doing something well.
These are beautiful things to want!
The problem, however, begins when we mistake the arrangement of these things as the finite definition of a meaningful, happy life!

Most societies today are surrounded by a variotion of measurements;
– How much do you earn?
– What do you do?
– How productive are you in life?
– How independent are you?
– How much have you achieved?
– How far have you come towards your goals?

And when that is the daily background noise, whether it be from family, social media or even from your own internalized self; even the concept of happiness can become a performance. AKA; A carefully arranged exhibition of wellness, success and personal growth… And if your life does not resemble this exhibition, you are encouraged to consider – (excuse my language) – what the f. might be wrong with you?!
– Perhaps you’re just not trying hard enough.
– Perhaps you need to be more disiplined.
– Perhaps your ambitions are unrealistic.
– And, perhaps you should be grateful for what you have!
All of which are possible by the way!
And all of which are rational to consider…

But!
There is a particular cruelty in being told to dream smaller, just because the world as it is, refuses to make room for your dreams -thus shut them down with roadblock after roadblock for no logical reason what so ever.

I know ambitions can be complicated when you are disabled. There are many things I want to do, that require more planning than they might for someone else. And opportunities that come with practical barriers. There are days in my life where the current state of my body has a veto in my schedule, whether I like it or not.

But – and this is a big but!
I refuse to believe that the existence of limitations means I should stop wanting things. And I refuse to believe that a disabled person should be less ambitious in order to be more acceptable to society.

And I refuse to confuse a difficult route with an insignificant destination.



A different geography

Whether we like it or not, disability changes the geography of life.
Sometimes the distance between where you are – and where you want to go is measured in kilometres. Sometimes it is measured in personal energy.
Sometimes the distance between wanting something, and being able to do it is not a lack of motivation, but rather a lack of accessibility, support, health, money or opportunity.

Someone ones told me to stay in my lane, accept my defeat so as to not be sad.
But they got it completely wrong.
Because, the potential of my ambitions makes me happy!
And disabled or not, a dream can remain important while the route towars it changes…

If there is one thing I wish were more apparant about disabled lives its this;
We are not all standing at the same starting point, looking at the same road, with the same supplies in our backpacks.
– Silje Elsrud Yttervik

Some of us have spent years learning how to navigate our presence and existence in the world; becoming experts in our own limitations, long before we were old enough to understand why the world seemed so diffucult.

Some have had to learn the difference between accepting what is real, and surrendering to what other people expect of us.
That in itself is a strong distinction, and does not only apply to people with disabilities!

I can acknowledge that my body has limitations, withouth deciding that my future must be limited to said limitations:

I can plan around my health, without making health the only thing to plan around.
I can be ambitious and still need help.
I can take time to rest and relax – and still be serious about my work.
I can have a life that requires adjustments, and still want a life that is rich, meaningful, creative and full of possibilities.

A different route in life is not a smaller life.
It’s a different route.

What if happiness is somewhere else?

Perhaps one of the strangest things about the concept of ambition, is that it can be so closely tied to a spesific destination that we forget to ask whether we actually want to live there.
– Silje Elsrud Yttervik


We are told that happiness comes,
– With the perfect job.
– With financial success.
– With a beautiful home.
– With a good relationship.
– With the perfect body.
– With the perfect family.
In general;
– With the version of ourselves that has become entirely satisfied, achieving all their goals.

But, I believe that for most people,
happiness is not a destination marked on the map. Instead, I view it as a collection of places, people and experiences that make us feel the most like ourselves.

For me, that might be things like playing board-games for hours with my gamer-friends, or having lunch with my girlfrinds in between busy days. In having a fun conversation on the phone, or a walk in the forest behind my house, or visiting known museums while travelling to other cities/countries.

I also find happiness in truly personal things; like curating a safe, calm, clean and beautiful space just for my own pleasure – or listening to music on headphones at home, being completely enmeshed in my own creative headspace.

And it lies here;
in the freedom of knowing that while I have not completed all my dreams thus far – I still have time.
There’s still a road in front of me.

The map is not finished

My vintage-inspired globe placed on the desk with books, a bouquet of dried flowers, candles, and old writing supplies.

I do not know what my future will look like.
I know some of the things I want, some of the obstacles I will face – and I know that there will be times when I need to change my plan(s).

Some of these routes will take longer than I would like. Some things will require help; things I want to create – and directions I want to take, and versions of myself I have not yet met.

But more than anything, I think it is worth remembering, that as the world becomes eager to tell us how our lives should look – and as disabilities are treated as a reason to lower standards rather than a reason to rethink the structures around us;
a meaningful life does not need to follow the map given to us!
To not conflate ambition with achievement – or happiness with productivity.
These things are not the same!

And lastly, perhaps the most important thing we can do is to learn to distinguish between the things we cannot change, and the things we have not yet been able to imagine differently.
This is where true potential lies. And a possible beginning!

___________________________________________________________________


A small task for the week: Draw your own map!

I want to invite you to do something a little different this week.
Take a piece of paper.
On it, draw a map of the life you are building. You can use roads, rooms, islands, stairs, rivers – or just simply words scattered around.
Then ask yourself;

1) What did I learn that a good life was supposed to look like?
Which expectations did you inherit from family, society, school , work or social media?

2) What do I actually want my life to contain?
What matters to YOU specifically?

3) Which ambitions are still alive in me?
What keeps returning, even after dissapointment, illness, uncertainty or time?

4) What would make those ambitions more sustainable?
What support, resources, adjustments, boundaries or changes might help?

5) Where do I already feel like myself?
Places, people, activities or moments.

6) What is one small thing I can do this week that belongs to the life I am building?
A small move towards something bigger



– Silje

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.

  1. 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.

  2. 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.

  3. 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.

  4. 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 Stories We Inherit

Why remembering the past is one of the greatest gifts we can give to the future

First and foremost – welcome back! Or, if this is your first time visiting my ‘humble abode’; welcome!

It is safe to say that my blog has been through a series of visual changes during this particular vacation; many of which can be compared with ongoing changes in my own life…
While I am far from completely happy with it, it is at current, closer than it was before.

To say that this has been a rocky resting period, would be an understatement!
Firstly, I was preopared to spend a few weeks at my family cottage; relaxing – as one does. However, as Norway was in the Fifa World Cup for the first time in decades – very few of us got much rest, with the – (I would argue) national excitement that came with it!
Secondly, as is also quite common; several of my family members (who also happened to drive all the cars) grew tired of being there after only a week, leading to a very short time up there.
I was however, not that surprised to be honest, as many of them are «reliably unreliable» in that sense!

In retrospect, however – going home earlier was definately the best option for me, as my phone decided to break up with me the day before our departure. I now have a new one – and while I still love the ‘flippies’ – I’ve never gotten one to last me more than 2 years!
And as somene who values longevity, that is just repulsive.
I now have an S26 instead, with a great camera, and a supposedly better longevity potential.
Time will tell…

The Cottage
There are many reasons why the cottage is one of my favourite places. Not only does it almost function as a museum of my childhood; with elements I’ve made and pictures of me as a child; but it is also a connection to previous generations in my line, with their art, pictures and furniture – as a part of my familiar and historic heritage.

According to my mother, my grandfather finished building the cabin when she was 3 years old. That is over 60 years ago.
While most cabins from this generation today, has undergone severe «improvements» to commodify ‘homely’ practicalities (such as a sewage system) – our have not. There is electricity, and with mobile internet we have the opportunity to watch TV. There is also water from a well on the property, but the «bathroom» is an outdoor shed. Personally I dont mind, as the whole point of these cabins in the first place, were to relax and live slower and simpler – without the evergrowing rust of everyday life.

Today, most Norwegian cottages are built with the same amount of commodities that you have at home. And while this is very practical for those in need of them (such as certain types of disabilities) – I find it sad for everyone else, as with time these people will loose sight and knowledge of a large amount of our cultural inheritance.

It should be said though, that the rockiness of my vacation had little to do with phone or family initially. It began with me feeling really unwell for the first 3 days, then having the next three days completely packed with travel, meeting up with various family, and long-time birthday parties.
And while most of these things were wonderful- (getting back in touch with distant relatives especially!).
But when you’re on meds that make you tired from the moment you wake up and keep you as such untill the time you fall asleep, too much of the good can turn bad eventually.

Despite my tiredness, one of the more interesting things for me whenever I am at the cottage, is taking a day to travel, especially up to Beitostølen. It takes a couple of hours from where my cabin lies, and has in later times become extremely popular for newer cabins made and owned by ‘city folk’. Whether that is a positive or a negative can certainly be discussed, but I personally love that you can find high-end fashion shops, art galleries and homemade farm products within 5-10 minutes of driving distance – If you know where to look!

This year I bought a beautiful, yet highly overprised, full cotton shirt, as I had been looking for something similar. And from the farm [Bitebua] – a box of homemade prim and a pack of mountain butter. The taste is incredible.
___

As I mentioned earlier, a relative (owning the cottage next to our) threw a massive birthday party for one of her sons. It was very sweet and we all had a great time.
One of the most interesting attendants, however, I found to be my second cousins father-in-law. He was approaching 90 years, and told me many stories of pre- and post WWII Norway.
Many of his stories I recognized from what my grandpa used to tell me, some from what my grandmother would say – and some from what her sister still tells me.
Regardless, I view these kinds of stories as massively important. Not only from the point of view of a history nerd – but also from the view of someone wishing to preopare themselves for whatever hell is about to come.
History goes back and forth, untill we finally learn something from it. I see it all the time.
Will there be another war in the west before I die – most probably, based on the current way of things. And if so, I want to be fully preopared for what to expect, how to survive with the least amount of injuries. And it kind of goes without saying, that the likeliest way to get there, is to listen to – and account for the stories we inherit as people. And many of these stories will only ever be found, if we are willing to put away our phones, and LISTEN.

We inherit far more than genetics from our ancestors.
We inherit courage.
We inherit habits.
And more than anything, we inherit stories!

And as such, perhaps the greatest stories we inherit is the one, where ordinary people, just like me and you, have always found ways to keep living through extraordinary circumstances.
– Silje Elsrud Yttervik

Bilde av en sommeropplevelse med ulike elementer inkludert hytte, reising, foraging, kunst og blogging.

Travelling with Friends!
So, as I came home a bit earlier than originally planned, I was invited by one of my closest friends, to join him and his family down to another cottage, located in the south of the country. These cottages are a usually a bit newer, with more commodities than elsewhere, probably as a way to adapt from the fact that you cannot get there without a boat (you know – the types of cottages I mentioned before). This particular cottage is in Lyngør – a gorgeous Island area, with a rich history of its own;

«The Battle of Lyngør was a naval battle fought on 6 July 1812 between Denmark-Norway and Great Britain. The battle was part of the Napoleonic Wars. The most famous ships that participated were the Norwegian frigate Najaden and the British ship of the line Dictator.»
(https://snl.no/slaget_ved_Lyng%C3%B8rr)

While I had been to this cabin once before, this time we really had the time to explore the wonderful Marina-culture severly present throughout the island.
We walked throughout forest areas, I hadn’t seen before, went on top of reefs for a little bit of fishing (getting a ton of steps in in the process!) – and ate at several popular resturants along the pier.

Later in the week, we all went to another popular Marina city (Arendal) through a boat trip. With a father from the North of Norway, being on a boat has been an essential part of my childhood – and I absolutely love it! Whether it’s the smell of seawater, or the flowy, clean wind around my face – being on a boat is truly relaxing for me; even at high speed, in rain or during massive heat. I just love it! <3
Arendal is also a city I had never been to before, and I did the most for the time we had there; visiting «Sørlandsutstillingen» at an old art-gallery, taking photos of street art, a familiar church and pretty buildings, and visiting local shops to find my mother a birthday present. And then the whole gang went to catch dinner along the city pier, before taking the 1 1/2 hour boat-trip back to Lyngør.

Inherited Disability and the treatment of family
So, saying that I haven’t gotten an ounce of rest at either of these cottages would be completely false. Because, to me, even just the smell of the lake, the trees – and the old furniture inside, is enough for my specific nervous system to calm down.

Still – even if my own thoughts about being at these cabins is calm, warm and kind – there is no way of knowing how I would’ve been treated had my epilepsy been more obvious from a younger age – or had I lived at a different time.
Historical evidence suggests, I would most likely have been either institutionalized – or sent off for demonic church-treatings, depending on area…

An example of this is one of my mother’s family members, who were apparantly institutionalized several times during his life. When looking at the ‘full picture’ however, it’s really not that difficult to understand why…
As a young child, this boy was often ‘locked’ in a basement– as he would scream and shout in agony during the day, and his parents were afraid of what the nabours would think. When in his room, his parents would place a pillow over his head to make him stop screaming. Early 1900’s countryside Norway was terrible in that sense, as people knew very little – and acted as if nabours finding out (anything) would be a massive issue.
And to some it was! After all gossip spreads like wildfire –
and the worse, the better!!

Had I been born even further back, I would most likely have been burned at the stakes, as Danish ‘holymen’ convinced others that epilepsy was considered a sign of either being a witch – or having had contact witht the devil.
Now it is true; you don’t know what you don’t know – But the ways previous generations always lead to ultra extremes, have made me think alot longer about any decision I make that might implement other people…

I often worry that illness and disability has disrupted the life I was supposed to live. But standing there, in these cottages – surrounded by cultural, historical and familiar elements from several generations back – also makes me grateful for any of the positive outcomes in my current time.

With that in mind, I also have to add that going forward, my blog will probably only be updated every other week – as my current medications have made me so tired that I have little time or energy to write every week. Hopefully, as I love to write – changing this from something I «just have to get done» to something I «want to get done» will also have a positive effect on my writing going forward!


Question: Which inherited stories have had the biggest impact on you?
And why?

En kvinne med septum-piercing og røde lepper står i et rom med hvite murvegger og treinnredning.

________________________________________
A Task for you reader…
Look back at your life, and ask yourself;
– Which stories do I want to keep and continue passing on to future generations?
– Why these stories specifically?
Then, write them down.


– Silje

The Person They Remember

On growing older, changing stories, and realizing we were seen differently all along

So, first off – I turned 35 at the end of last week.
Birthdays often have a way of making me look backwards. Not only at the years themselves, but at the people we used to be.

Or, perhaps more accurately; the people we thought we were…

For a very long time, I believed I knew exactly
how other people remembered me.
– The fat girl
– The tired girl always skipping classes
– The strange girl
– The gothic metalhead

in general
– The one who was different

These assumptions made perfect sense to me.
After all, they were built over years and years of being bullied, and feeling misunderstood,
treated like I was different, and constantly wondering why I never seemed to fit in with everyone else.

When people tell you that you are strange, ugly and fat often enough, the natural way of our cognitive brain reacts to this, is to simply belive it’s true.

Looking back, I think that’s partly why I embraced the goth-inspired look as a teenager.
Don’t get me wrong, I genuinely liked what I wore – still do to a certain extent – but if I’m being honest, I also think I wanted to have a sense of «feeling in control».

As in, if people were going to call me strange and ugly anyway, I might as well make sure I could decide ‘why’ they were saying it. If people thought I looked unusual or strange – at least make sure it’s because I chose to dress unusuall-y.

And for me, at least to some extent – there is a strange comfort in choosing and being in charge og the thing people judge you for.
perhaps because it hurts less than believing that you never had a choice about it in the first place…


And after experiencing both examples of this during my first elementary and secondary school years, I definately belive it’s true.

I often think about a boy I knew in high-school.
He had a physical, very visible disability and we built a strong connection early on. He was highly intelligent, funny, a bit sarcastic – but far kinder than what most people realized.

Yet, I kept noticing that during classroom discussions he would occasionally say something deliberately shocing or crude, that would leave me totally flabbergasted!
Because I knew this person; and all of these comments were
completely out of character.

At the time I couldn’t understand it. But years later, I wonder…
Perhaps he was doing the exact thing that I was.
As in, If people were going to be rude – dislike, or reject him anyway, perhaps he wanted to decide why.

And that though has stayed with me ever since…

Because, I think many disabled people do this, intentionally or not.
Sometimes through clothing, other times through strange humour.
Sometimes through staying silent in times we are expected to speak- and at other times, through acting out in anger.
And sometimes, through rejecting other people… before they have a chance to reject us.

As a form of self-protection.

Then, last week – something happened that quietly challenged the story and the assumptions I’d had about myself for nearly 10 years.

One of my older classmates (a friend of a friend) looks at me during a barbacue get-together at my birthday and asks;

«How were you so incredibly good at English? I still remember how perfect your English was!»

And I laughed.

Not because the question was strange – I was very good at speaking English. But I laughed, because it was sooo different from what I had expected.
For over a decade I assumed the most merorable about me was my apperance.
Instead, the one thing he remembered the most,
was my skilled love of languages.

And it made me wonder…
How many stores are we continuing to tell ourselves, long after everyone else has forgotten them?

And if so, perhaps the hardest judge we carry throughout our lives, is the younger version of ourselves;
– The child who assumed every ‘double take’ was a form of rejection.
– The teenager who believed every immature insult was a form of truth.
– The young adult who confused insecurity with reality

And again, if so – maybe it is also about gently questioning the stories our younger selves left behind.
Because, other people often notice things we never see;
kindness and curiosity, various talents, humour or passion.
The things that feel ordinary to us, can often become ‘the thing’ someone else remembers decades later.

And perhaps those are the things worth remembering
the next time we look in the mirror!

—
Before I leave, I wanted to share one last thing with you…
Later this week, my family and I are heading for our cottage for a little summer vacation. This means that the blog will be having a little summer pause as well.

I am going to practice what I so often write about; like slowing down, reading good books – and spending time with the people I love,
while we enjoy the nature around us.

So, whether your own summer is stacked with fun adventures, or quiet moments with family and friends
I hope you will be able to do the same!

_____________________________________________________________



A small task for you, reader…

Think of someone you haven’t seen in years.
What is the first thing that comes to mind when you think of them?

Now ask yourself:
«What is someone remembers you in exactly the same unexpected way?»

Maybe you were never defined by the things you’ve spent years trying to hide. And if you were, Maybe that is just a projection of that person’s own insecurities?


– Silje

The Hidden Cost of Being Different

____________________________________________________________________

On milestones, expectations, and the courage to follow your own path

For most of my life, I have been told — either directly or indirectly, that there is a ‘correct’ way to live.
A specific timeline to follow, a correct path to walk – and set of milestones to reach within this specific timeline, on this correct path.

In theory , this seems very simple;
– Get good grades, in order to get a good job, in order to move out and buy a house, in order to find a partner and have kids — in order for your kids to,
Do the same.

While this is a good base-point, and a good strategy for many, life rarely unfolds according to theory.

Mine certainly didn’t!

Looking back, I don’t think I was particularly easy to deal with. First off, I’ve never really followed the standard path (by Norwegian standards anyway!)
Not because I was rebellious for the sake of rebellion – but because my life simply refused to be this linear.

As a child, I often perferred talking to adults instead of playing with other children. I was respectful, curious and generally more interested in conversations and/or playing by myself – making up stories in my head.

Then school arrived.
Along with it came bullying, a lot of confusion – and heavy emotions I struggled to explain.

What none of us knew at the time, of course, was that epilepsy had already begun affecting my brain. Small seizures were happening all throughout the days,
years before anyone recognized them for what they were.

So,
for my part, I wasn’t trying to be difficult.
I was trying to understand a world that made very little sense to me.

As a teenager, I became dramatic at times – passionate at others, and continued to be endlessly curious about life beyond my own small corner.

In my late teens – early adulthood my seizures had become better then before, and I took the desicion to travel abroad.
A year later I came home, and after some time I began studying.

During these years I built many friendships,
but over time, I noticed something about myself;
I would enter a new group of people, find a few interesting individuals I genuinely connected to – and then slowly become frustrated by how many people seemed content to simply «follow the crowd».

Mind you, none of these were bad people!
But many seemed uncomfortable asking questions.
Afraid to disagree, or emotionally unable to stand apart.

And I never quite managed that.

I suppose part of it comes from always feeling like the black sheep;
– A little different from the rest of my family.
– A little different from my friends.
– A little different from the society I am a part of.

And this in itself can lead to a variety of different things.

Because, looking back – I don’t necessarily think I am that different.
I just execute ‘ME’ more openly and honestly than many people are comfortable with.

Have I been rejected or excluded from social circles because of this?
As a child? – Definately. As an adult? – Probaly.
But none have had the integrity to say it to my face.
And to be truly honest, I wouldn’t want to be a part of something like that anyway.


However,
being different still comes at a cost.
This is particularly true when society builds its expectations around conformity.

If you think about it, the traditional milestones most of us grow up with assume a fairly predictable life;
– A healthy body.
– A stable path forward.
– A straight road.

But many of us do not live like that.
Many don’t wish to either.
And many of the ones who do – simply aren’t able to, due to things they cannot control.

Some of us become ill or disabled, others need to change direction entirely.
Some have no idea what they really want, and have simply become accustomed to following everyone else.

And suddenly, many of the socialized milestones begin to feel less like a guideposts, and more like measuring sticks.

Sometimes we become so busy fitting ourselves into other people’s maps, that we forget to draw our own.
– Silje Elsrud Yttervik


Sometimes I look at certain milestones and feel left behind;

  • I wished I had my own home by now, as I am very good at designing and curating. And I feel the need for a quiet and calm space, that is simply put ‘difficult’ to achieve with 3 other adults in the house.
    But knowing I had the choice between financial stress or a lack of independence – I know I would choose interdependence any day.
    And I can confidently say that I stand by my choice.
  • I’d hoped I’d be fully employed by now, or that I’d have more flexibility around my time and transportation options. But these are things I cannot change.
    And spending all my time annoyed and unhappy about this seems counterproductive.
  • I do wish I had a romantic partner by now, as I do want children in the future – and have always loved romance and passion. But due to my disability, I know that the most responsible thing I can do, is to be extremely selective around the various personality traits I look for in potential partners.
    That too is a choice I’ve made – as partners who are either incompatable to the way I live (ie; my life would be better without them), or lacking the qualities needed in responsible parental figures, is pointless.

And, whether we are aware of it or not, these specific things have a way of centering themselves in our heads…

However,
by being a very straigh-forward, ‘Standing on Business‘ type of person – I’ve started drawing out my own map. And asking myself different kinds of questions.

Because, maybe there are milestones in life I will never reach.
SO WHAT?
I don’t think its right to see that as failure
– It’s just a different map alltogether.

Looking back – I do not see a life standing still. Instead, It is moving heavily. My life have unfolded quite differently, through several knocks and crannies – perhaps stranding quieter RIGH NOW than ever before.

As many disabled people eventually notice, traditional milestones made for modern societies today, were never made with us in mind.
And yet, they are treated as universal markers of sucess.
I cannot agree with that.

What happened to being a reliable citizen?
To standing up for yourself, your friends or your family?
To live life by your own values?
To have integrity?
To feel a purpose and intention with your life?

These days, I find myself caring less and less about whether my life looks ‘normal’.
It probably never will!
Instead, I care alot more about whether or not life feels meaningful.

I love creating things,
I love learning.
I care about friendships built on honesty rather than convenience.
I care about becoming the woman I want to be, even if the route towards her is winding.


And the older I get, the less convinced I am that the purpose of life is to follow a map.
Maybe, instead – the purpose is to make one yourself.
—————————————————————————–

A small task for you, reader…

Think of one milestone you feel behind on.
then ask yourself:

«Do I genuinely want this, or do I simply believe I should want it?»

Sometimes,
the answer might surprise you!

– Silje

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

When Good Advice Becomes Bad Advice

Why disabled people need a different filter for self-improvement culture

There is a great deal of advice online these days. Some of this advice is absolutely excellent. Some of it has helped me severly improve my life.

And some of it, while well-intentioned-
becomes surprisingly harmful when applied to disabled people.

Recently, I came across a very sucessful entrepeneur argue that people should take complete and full responsibility for the trajectory of their lives.
Now, I understood what she meant by her statement. In many ways, I even agreed with her.

Personal responsibility matters!

But as I listened to the video, I found myself asking a few very simple questions;
How exactly am I responsible for being born with epilepsy? And –
What am I supposed to do about it?

Because, there is a vast difference between taking responsibility and control over what you do in your life, and taking responsibility for things you never controlled in the first place.

And I think many disabled people spend years carrying the guilt of that distinction.

Because,
Responsibility is not the same thing as control.

In fact, one of the most important lessons I have learned as a disabled adult is that responsibility and control are not the same thing.
– I can take responsibility for taking my medication at the apropriate times.
– I can take responsibility for laying off caffeine, alcohol and all other things that negatively affect my disagnosis.
– I can take responsibility for exersizing when my body allows it, eat well by making sure my money prioritize it, and take responsibility for how I talk to myself, how I spend my time – and generally stay on top of my health; whether physical, dental, mental or emotional.

But i cannot take responsibility for being born with epilepsy.
That is beyond my control.
I cannot take responsibility for having seizures daily, even after doing everything I possibly can to avoid them.
And when they do appear, I cannot take responsibility for getting a concussion,
for having to avoid workouts or needing longer hours of sleep, leading to not being able to wake up as early as is recommended.

And this distinction matters.

Because, many forms of self-improvement advice quietly blurs the line between what we influence and what we control.

And once those things become confused, disabled people often end up blaming themselves for circumstances they never had any control over to begin with.
Things that were never theirs to choose.

«You can do anything if you want it badly enough»

This is probably one of the most common pieces of motivational advice in the world.
And it is also one of the least accurate.

To use an example from my own life: I cannot drive a car.
This is not because I don’t want it badly enough. Nor is it because I can’t find a car to drive if needed.
No,
I cannot drive a car, because Norwegian law requires people with epilepsy to be seizure-free for at least a year, before driving. This law has changed significantly througout my life; from 3 years to 2 – and now 1. But I have never been able to reach the appropriate requirement. Which meant that I have not been able – (or allowed!) to practice driving, thus have not been able – (or allowed!) to take the test for a licence.
And no amount of motivation changes that reality for me.

I cannot simply change my seizures on bare belief alone.
And I cannot simply change the law purely by wishing it.
(And in all honesty, I would not want to either, as I would find it irresponsible!)

In a similar fashion, a paralyzed wheelchair user cannot simply decide to walk.
A blind person cannot simply decide to see.
And, a person with chronic fatigue cannot simply decide to have more energy.

We can only work with our current circumstances;

by adapting, learning and growing as people.
But we cannot simply wish biological realities out of existence.

And truthfully,
there is something strangely liberating about accepting that.
Because, once we stop fighting reality, we can begin building lives that actually fit it.

Now I still have high hopes for disabled people in the future. Hopes of high employment, through changing the current system to one more sustainable for all people.
Hopes of hight accessibility to nessesary treatment, by lowering cost, and building knowledge.
Hopes of low stigma, by making medical diagnoses more open to talk about, and hopes of a world where everyone can live, withouth feeling at fault for being born disabled.

So,
here is a list of advice, disabled people should probably leave behind…

There are a few pieces of popular advice that I think disabled people should approach with caution.

X «Your life is entirely your responsibility.»
This is partly true, but ONLY partly.
Genetics matter. Health matter – and access to healthcare matters. Economics matter, discrimination matters. And – the country you were born in matters.
Pretending otherwise is denial of reality; and no amount of empowerment speech is going to change that reality.

X «Never depend on anyone»
Humans are social creatures. And every successful person depends on someone;
Family
Friends
Partners
Parents
Assistents
Coworkers
Teachers
Communities
Doctors
Support workers.

The myth of complete independence is exactly that – a myth.

X «If you’re not succeeding, you’re making excuses.»
Sometimes people are making excuses, there’s no going around that.
Other times however, they are facing genuine barriers that they cannot cross.

Learning the difference between which is what, is a form of wisdom not easy to find.


On the other hand,
here is a list of advice worth keeping!

Fortunately, not all self-improvement advice falls apart under scrutiny.
Some of it becomes even more valuable when viewed through a disabled lens.

V: Build daily agency
Agency is not about controlling everything from hell to heaven. It’s about controlling something. It can be relatively easy things, like; making your bed, taking your medication, answering your emails or keeping track of your finances.

It can be about going to the gym, or going for a walk, or cleaning and organizing parts of your area.

Personally, my current daily agency is very simple;
– 1 task of body movement: like stretching, going for a walk, or working out with a physiotheraphist.
– 1 task of contribution to the home: cleaning, grocery shopping, making dinner or being an emotional support for the rest of my family.
– 1 task of mind growth: reading, writing, learning or slowly building a skill.
– 1 task of future-improvement: writing a blog, working on my newsletter, a future charity organization, taking pictures or videos, or slowly making my books.

Whether big or small, these tasks of daily agency do not cure my disability.
But they have four very important focus-points, that help build confidence, self-esteem, self respect, and momentum over time.

V: Focus on what you can influence
Instead of going all in at once, find something. Just something that a simple change in your daily system, weekly habits or yearly goals can influence for the better. You do not need complete controll to make progress in life, you just need a place to begin.

V: Build interdependence instead of chasing independence
Out if all the lessons I have learned in my early adulthood, this is probably the most important one;
The goal is not independence for the sake of independence.

The goal is a meaningful life.
And sometimes that includes help. Sometimes it includes support. Sometimes it includes accomodations. And there should be no shame in that.

In fact, most societies have always depended on people helping one another.
The African proverb «It takes a village» does not come from nothing.

V: Define contribution more broadly
I believe one of the greatest failures of modern society is how narrowly it defines value.
Because, contribution should not be limited to paid employment, as many people contribute through a variety of different ways;
– caregiving
– volunteering
– art
– mentoring
– friendships
– emotional support
– community building
– and countless other forms of labour that rarely appear on a payslip, yet is completely needed in any society.

«Alone we can do so little; together we can do so much.»
– Helen Keller

I think disabled people often understand this much better than most.
Because, our lives often forces us to recognize something many people spend years trying to avoid:

No one succeeds entirely alone

«Do not judge me by my successes, judge me by how many times I fell down and got back up again.»
– Nelson Mandela

This quote resonates with me far more than most productivity sloagans ever could.
Because resilience is not the absence of limitation.
It is learning how to continue despite of it.


What the research says

Psychologists, such as Edward Deci and Richard Ryan have spent decades studying what helps people thrive.

Their Self-Determination Theory suggests that well-being is strongly linked to three core needs;

-autonomy
– competence
– and relatedness

To put it in other words, people flourish not because they work harder than everyone else, but because they have meaningful choices, opportunities to succeed, and supportive relationships.

I personally believe that is a far more nuanced picture than the idea that success is purely an individual responsibility.
And honestly, feels much closer to reality.

Silje Hjemme
By: Silje Elsrud Yttervik


The truth I keep returning to

Now, of course, before someone tries to take a whip at me, as I mentioned in the beginning of this post; personal responsibility is important.
And the disabled people that I know, are some of the most responsible people I have ever met.
Because, we have to be…

We track medications, we manage symptoms, we attent various appointments, and navigate systemt.
We adapt constantly!

But you cannot know what you cannot get to know – thus to us, a lecture about personal responsibility tends to fall flat.
What we need, instead, is advice that recognizes reality.
Advice that understands the difference between responsibility and blame.

And this is huge – as good advice helps us build lives within our limitations, instead of pretending those limitations do not exist.
This does not mean to never test your own limitations; we all should!
But in a safe and sustainable matter.

Because, for us, going too far too quick, very often lands us in a hospital bed,
considerably worse off then when we started.
I surpassed my limits once in my early 20’s, and ended up with a burnout, worse seizures and a massive fatigue – that I have still not recovered from almost 10 years later…

Good advice – real good advice should make people stronger.
It should not make them feel guilty for things they’ve never had the power to control.
__________________________________________


A task for you, reader…

Today, make two lists:

On the first, write down three things you genuinely have influence over.
On the second, write down three things you have been unfairly blaming yourself for.
Then compare them.

You may discover that one of the heaviest things you carry were never yours to carry in the first place.

– Silje

Spring Was Never Just a Season for Me

On forests, nervous systems, and why spring feels like ‘life returning’

There is a strong reason why spring, to me at least feels very emotional.
Not just because the sun shines longer; thus making the days lighter, and the apparant beauty visible longer. But it also seems to have a positive effect on my emotions.
Almost as if something inside my body begins waking up again, alongside the earth.

And I do not think that feeling is imaginary.

In Scandinavia, Spring especially has historically meant far more than just warmer weather. After long winters of darkness, isolation, cold and the need to survive, spring represented the light, warmth and follow up movement returning to the world, where people were once again ‘safe’ until the next wintertime.

During the spring, the ground softened. People began to gather again, and the animals reappeared with the forest accesibility.

And for thousands of years, human nervous systems adapted themselves around nature’s mechanisms.

Personally, I think about this often when I walk in the old forest behind my parents house.
The forest stretches all the way from our area to my old elementary school and beyond – ancient enough that parts of it likely existed during the viking age.

When I was a child, I used to sit there alone during school breaks. At the time I was stressed, heavily bullied and very overwhelmed.

So, instead of forcing myself into unkind, noisy social spaces, I just dissapeared into the trees. And became «The girl who talkes to trees».

And even then – before I understood disability, nervous systems, or stress regulation – my body was already aware of something important:
The forest calmed me down.
– The smell of wet earth.
– The calm movement of leaves.
– The filtered light through the branches.
– Birdsong in the sky
– And the quiet repetition of nature.

It all softened something inside me.

And now, years later ,science increasingly confirms what humans have probably, instinctively known for centuries:

Nature regulates us.

Modern research increasingly supports this instinctive human relationship with nature. As an example, studies on Shirin-yoku – the Japanese practice often translated to «forest bathing», have repeatedly shown reductions in cortisol (the body’s primary stress hormone), anxiety, blood-pressure, and nervous-system overload, after time spent in forest environments. (Sage Journals/ PubMed).

One 2019 systematic review and meta-analysis examining multiple forest-bathing studies found significantly lower cortisol levels in people exposed to forest environments compared to those mainly exposed to urban ones (PubMed).

And honestly, I do not find that surprising at all.
Because the human nevrous system was never built entirely for concrete notifications, fluorecent lights and endless urgency.

Instead, for most of human history – especially in Northern Europe – forests were a sense of safetey, shelter, medicine, sprirituality and survival ability

Furthermore, these studies on forest exposure even attribute that short exposure to green spaces can positively affect mood and cognitive recovery.
This research suggests that even short exposure to green environments can improve mood, reduce mental fatigue, and help regulate overstimulation – sometimes only within a few minutes of sensory exposure to nature (PubMed).

And to be honest, I think disabled people often feel this especially strong. Because, when your body is already overstimulated, exhausted, inflamed or neurologically overwhelmed, nature does not demand a performance from you.

A forest day does not care how productive you are.
Or how social you are. Or how much energy you have that day.
It simply allows you to exist.

Image by: Silje Elsrud Yttervik

«And into the forest I go, to lose my mind
and find my soul.»
– John Muir

Spring and the disabled nervous system

As was my own situation, I think that Spring can often become a kind of nervous-system reset for many disabled people. Not nesessarily in these dramatic «new beginnings» kind of way that social media often presents, but rather in the forms of «spring healing», one small step at the time.

Things like Opening a window early morning to hear the birdsong in the wind, standing in the sunlight for a few minutes. Walking slowly throughouth the day instead of constantly being efficient. Or just sitting quietly beside a tree, letting your shoulders unclench.

Perhaps these small things matter more than we think.
Because, disabled people often spend enormous amounts of time surviving in the world:
– endless appointments
– varying daily symptoms
– overstimulation and pain
– Daily masking
– Constant future uncertainty

So, spring quietly reminds the body that survival is not the only state available to us.

Historically, humans belonged to the seasons

Modern life often treats humans as seperate from nature. But historically, especially in Norther Europe, as mentioned before, seasonal rhytmic events shaped nearly everything; still do to some extend.
But earlier, this applied to nearly everything:
– Food
– Sleep
– Work
– Celebration
– Religion
– Movement
– Community

Even many Christian spring traditions in Scandinavia carry traces of older pagan seasonal rituals underneath them; fertility, symbols, grenery, fire, cleansing, sunlight and renewal. |

And maybe part of why spring affects us so deeply is because our bodies still remember those rhytms, even within modern systems.
Especially bodies that are already sensitive to change.

Disabled joy in spring

I also think that disabled joy can look very different during springtime.
Instead of social-media adapted dramatic adventures, sometimes they can be as simple as having enough energy to picnic outside in the sun, the smell of heavy rain on newly cut grass, opening a balcony/ garden door or window for fresh air – or simply realizing your nervous system feels slightly easier to control than it did two months ago.

«Adopt the pace of nature: her secret is patience.»
– Ralp Waldo Emerson

And while simple, I still think this counts as joyful.
Because, many of us are forced into different bodily rhytms long before we are emotionally ready for them.

Thus, perhaps what is actually happening is that springtime gently reminds us that our slower pace is not a failure in life, but a form of nature-led pace that is both peaceful and easy to commit to.

Tiny things matter!

A few gentle spring rituals

These are not productivity or self improvement projects, just a form of nervouss system kindness towards ourselves and our bodies:
– Open a window for five minutes in the spring morning
– Sit outside withouth the need to ‘do’ anything.
– Touch Moss, bark, leaves or grass intentionally
– Listen to birds instead of music once a day
– Let sunlight hit your face before you open screens (remember SPF!)
– Take a slow morning routine somewhere, if possible
– Allow yourself to notice the beauty of nature

________________________

A small task for you, reader…

This week, try to spend a few quiet minutes somewhere natural – even if its only a garden or a park bench, or even just an open window.

And ask yourself:

«What happens in my body when I stop trying to move faster than nature does?»

You do not have to bloom all at once
No part of nature ever does.

– Silje