Stikkord: Epilepsy

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 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 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 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

You Can’t Build a Life You Don’t Have the Energy to Live!

Why rest is not a reward – but a requirement!

Despite my happiness of being back home and somewhat «in route» again, as they say; the past few weeks have reminded me of something I’ve long kept trying to forget:
That it’s my body and my mind that decides my days.
It’s not my plans, nor my ambitions.
And certainly not how much I actually want to do.
No, my body is the decider. And this past week it has been very loud about it.

First of all, my seizures have come back again. They’re not exactly the same as before, but big enough to take over my being; with moments where I say and do things I don’t fully control, that I don’t remember, and that my eyes can’t see.
Then it has taken everything from 5 – 30 minutes afterwards for me to properly ‘come back’ to myself, and understand what has happened.

And again, after all of this, there is a kind of tiredness, very difficult to explain to those who’ve never had a seizure before; but in short – it’s like feeling like you’ve just run a marathon, only the marathon is in your head, and may just have lasted a few minutes.

But here is the thing: most epileptic seizures are short. (In fact longer seizures can be dangerous!) But a minute of seizure can be enough to need several hours of relaxing time. This is not only in terms of physical restitution, but also mental as well – and something that can make even the smallest act feel like too much.


When the plan changes – again

During the time I’ve spent since coming home, I’ve had to ditch at least a dosen plans. Small ones, maybe – but no less important.
– I was hoping to be able to take the buss again by myself.
– I was hoping to slowly return to a daily rhytm that at least felt a little more independent than my current life.
And now, due to my body and minds’s distrust in my own wishes, this may not be possible – at least not yet.

For me, this shift is both practical and emotional. Because, every time my body redraws the limits, I – yet again, have to adjust my life around them, let go of something I just recently started to believe in, and choose an even slower pace instead.

You can’t build on exhaustion

Regardless of what you’re trying to build in life, I think there is a quiet pressure in the world to keep building. Even when you’re tired. To keep improving, even when you’re completely burned out, and to keep moving forward – no matter what happens.

But the truth that we will all be forced to face is this;
You cannot build a life on top of exhaustion.

I mean, try it all you want, but your life won’t be sustainable – and thus you won’t be able to actually live in it.
Because, days built on pushing through, ignoring signals and borrowing energy you don’t have, is the key to a loose, rocky foundation. It might look fine from the outside, but the inside has already started collapsing.

Rest is not something you earn

I think this is where many of us get it wrong. We treat rest like a reward for something.
Something you get after you’ve done enough ( I know I have!)
Or after you’ve proven yourself to the square-faced beaurocracies.
After everything else is finished.

The problem with this, is that for bodies like mine, and for many others’ – rest and restitution is not optional. Instead, it is the thing that makes anything else possible.
Withouth rest, there would be less stability, less clarity and no real progress.




Learning to live smaller – and more honestly

So for now, my days will be slower. This means days that are considerably shorter, with much more sleep and rest-time. At certain moments of the day they might be quieter, and more limited than what I would personally prefer. But whether I prefer it or not;
– A good morning routine
– A calm evening routine,
– Massive amounts of sleep
– And only 1-2 smaller things in between, are the main foundation of what my current body needs in order to actually sustain itself.

And while I know this is in my best interest, it is still difficult for my ambitious mind to accept. Particularly, as we are taught to measure our lives by how much we do.

So, for me – this might have to change.
Instead of looking at producticity as a measure for success, I might have to look for other signs. Like Stability. / Like the ability to rest when in need. / Like the skill to listen to your own body, and act on it, before things get even worse.

And sure, what this actually means for me is:
– Physiotheraphy with strength-training every week, to minimize my risk of osteoporosis
– Only taking the buss under the care of someone else
– Accepting admittance to the hospital sometime again this year,
– And changing current medication even further
It means changing my timelines yet again.

And while I don’t like that, I also know that ignoring these things won’t make them go away. Much like just pushing through won’t make me any stronger – it will only make me more exhausted, as the rest of the world expects more and more, based on what I already have already accomplished.



A different kind of building

So currently, I am trying something else;
to build a life that i actually have the energy to live.
Even if it looks smaller, slower and less impressive from the outside. Because, If you think about it; a life that fits your own energy – is worth more than one who constantly drains it dry.
And maybe that is the real work:

Not building the biggest life possible, but building one that holds.
__________________________________

A small task for you, reader…

Tonight, ask yourself:
«Am I building a life I can actually sustain – or one I am constantly trying to survive?»
Remember, you don’t have to fix it all at once.
Just notice the answer.
And then, choose one thing tomorrow that could make your life a little more livable – not just more productive.

– Silje

Independence is a Myth

What we call strength, is often just support we don’t see!

Today, there seems to be a quiet ideal at the center of (at least Western) modern society;

To be independent, to be self-sufficient – and to be practically unaffected by the world around you.
To need no one, rely on nothing, and to stand entirely on your own.
In turn, this is presented as ultimate strength, as success – and as something we should all strive towards.

The actual truth however, is much- much simpler, yet much harder to accept.
Because,
no one lives like this.

» There is no such thing as a self-made man. You will reach your goals only with the help of others.»
– George Shinn

Independence, as we have been taught to imagine it, is not based on reality.
It is a story we tell (to both ourselves – and to others) that works really well for the upholding of various systems, yet far – far less for actual human lives.

And for disabled people, this stings ever worse, as for us, it has never been true to begin with.

The easiest person, not the best one

As an example, this ideal of independence shows itself clearly in the workplace;
where we are told that ‘hard work’ leads to opportunity. That skill, edcation and persistence will open doors.
Now, I am not disclaiming that skill, education and persistence aren’t good qualities to have regardless, but in a workplace environment, most settings are not looking for the most capable person – they are looking for the easiest one.

From a Norwegian setting, this means that most businesses, at the moment they advertise a position, they either have a clear candidate in mind (a friend of the manager/ someone who already works there and knows everyone/ or someone who impressed someone else in said business).
You know; the one who requires the least adjustments, the least understanding – and who might cause the least disruption.

And this is a great example of where the myth of independence can become dangerous. Because, if independence is the standard, then anyone who requires support is immediately seen as a risk – as opposed to a qualified assett.
Not because they lack the right ability, but because they expose the truth:
No one succeeds alone!


Healing is not the goal – stability is

This same illusion also appear in how we talk about health.
We are taught to aim for recovery, to get better, and to return to whomever we were before. But for many of us, that ‘before’ version of life does not exist anymore.
My mother recovered from cancer, and she is now cancer-free! <3 But heavy cancer treatment tears down the body, regardless of how much strength you have – and my mother will never fully return to who she was before.

Furthermore, for some of us, this ‘healed’ version of self never existed in the first place. Thus, chasing a life free of any kind of disease or disability – can be its own kind of harm. Because, healing as it is often imagined, suggests an end point – a life where no more care is needed.
I was born with epilepsy; it sits in my brain. So, unless you remove said part in my brain (which for many is not possible), I will always have epilepsy.
Thus, for me, the goal is not to ‘heal’ from it – but rather, to remove the impact is has on my life. This means: have as few seizures as possible, with as few medications as possible, with the least amount of negative side effects as possible.

And due to this experience, chasing an end point to ‘healing’ sounds ridiculous in itself; as those lucky enough to age – will need some form of care sooner or later.
So what many of us actually need, is not independence from care – but, to get some form of stability from- and within it!

For me, this means a life where support exist consistently. Where systems adapt to what those within them need – and where needing help is not seen as a failure – but rather as a regular part of being human.

«The good life is a process, not a state of being. It is a direction, not a destination.»
– Carl Rogers

Your home is not a failure – it is a response

The constant pressure to be independent, does not stop at work or health, it also reaches into our homes.
Staying home is often framed as avoidance from society, or as something to fix.
But for many of us, especially those of us with an unstable disability, home is not where we give up. It’s where we adapt – where our energy is protected, and where positive routines can exist without a constant negotioation.
It’s where ‘the good life’ seems possible again – and (should be) where the amount of daily stress miniscules only to what is absolutely necessary.

Many calls spending time at home lazy. But I think this is incorrect. True for some people – definately, but in such cases, I belive there are other issues (ex mental) that needs to be looked intoo first. For the grand majority, however – especially those with a disease/ disability; spending time at home, is the only way to fully relax.

Gratitude, and the quiet weight it carries

While I have expressed my gratitude to family and friends deeply in the past – and I fully stand by it, there’s no question that gratitude can also feel very heavy.

We are told to be grateful for what we have. And I belive most people are.
But very often, feeling gratitude can turn into expectations (from either party) – and said expectation can turn into pressure.

It’s almost as if feeling gratitude (for what we have) can make us feel like we must accept everything as it is. That we should not ask for more – after all, we should be grateful!
You want better treatment? – you should be grateful that you get any treatment at all!
You want a healthier work scedule? – at least you can get work!
You want cheaper medication? – Do you know how many people can’t get meds at all!
You want a more adaptable home? – are you aware of how many sleep on the street?’

And so, slowly – over time, we begin to stretch ourselves. We clean more than we should, work more than we can sustain, push further and further beyond our own limits, stretching ourselves thinner with every step.
Not necessarily because we are forced to do it – but because we feel like we owe it.

Slow is not the problem – the system expecting speed is

If independence is the true ideal, then speed becomes with what we measure.
– Fast recoveries
– Fast productivity
– Fast results

And anything slower is seen as falling behind. But what if the problem is not slowness itself?
Day by day, year by year new studies compile linking hustle cultures to poor mental/ physical health, slow childhood progress to undiagnosed – thus untreated disabilities, and fast-paced mental states to less ability to focus, less attention to detail – and a poorer quality of life.

So what if the problem isn’t slowness – but rather systems only able to function at one pace, all the whilst calling everything else a failure?

Remember, slow progress is still progress, and if fast paced systems insist on you taking tree steps forward – only to then have to take two steps back, you’re going to wear yourself out!
And sustainable lives are built far more often through patience, rather than pressure.

The truth we already know

While it may take some time for people to refraim it in their heads;
Interdependence is not weakness!

It is a reality the majority of people will experience throughout their lives.
Because, everyone relies on something.
Or someone.
Or on systems, structures, relationships and on support.

The only noticable difference is that some of us can’t pretend otherwise!

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A small task

Take a moment to notice one place in your life where you already rely on something – or someone.

Then ask yourself;
«What would it feel like to see this not as a weakness, but as a part of how life actually works?»

You do not need to carry everything alone. No person were ever meant to.

– Silje

Happy Easter!

I am home again!
– at least for now.

Like many returns after treatment, it tends to be a bit messy!
And while I love being back, there is a quiet tension all around me; the urge to clean and organize everything, and just reset my surroundings completely – and the awareness that I need to slow down.

So this spring, as winter here in Norway is heavily drawing its final breath, my main focus is to find the balance between movement and stillness. Between doing everything all at once – and doing nothing, allowing myself to to just sit down and relax.
This is massive to me – as there is nothing more satisfactory than a freshly cleaned space, yet at the same time – my brain has a deep need for a calmer daily rhytm; one that my body can actually sustain.

Easter in Norway, has always held a particular social importance; regardless of religiosity. Yes, it is technically a religious holiday – but culturally, it is almost like a collective breath of fresh air.
In a single week its as if the darkness of winter dissapears, as (many) families gather at their cabins, read (or watch!) crime novels, eating oranges and chocolate, while the snow quietly melts outside, into a promise of spring.

And it truly is a promise!
Much like the older celebrations of the spring equinox, still celebrated here in the north we slowly see the sun return, day by day – as life ‘begins again’.

Perhaps this is why Easter feels so different this year.
Because, coming home now does not feel like returning to what was. Instead, it feels like stepping intoo something else completely, something new – that I can’t quite put my finger on, or even fully understand.

But it is a feeling of having a different pace of life. A new awareness of who I am becoming, and what needs to change for me to accomplish this.

And maybe that is what this Easter holds for me – not just a time for tradition, rest and reflection, but also a threshold into something new.
No doubt, it feels a little scary – but I am also very exited to see what life brings!

Happy Easter!
– Silje