Epilepsy – Side 2 – Silje Elsrud Yttervik

Rebuilding a Life in the middle of Medical-Rehabilitation

What no one tells you. What you learn over time.
And what living with illness really means.

As I mentioned in my previous post. I have been away for a while.
For the past two months I have been admitted to a specialist hospital for the first part of a – (most likely) two-part medical-rehabilitation. In short, this means lazer-focusing on changing medication and their effects on my body and my brain, and simply resetting. The hope throughout this, is a persons own ability to make their life better and more sustainable long-term, especially those of us born physically (dis)abled.

However, as many experience through these situations; there is a vast difference between being treated for something, and learning how to live.
For many, medical-rehabilitation can help stabilize a body. It can offer a healthier life structure, expertise – and temporary safety. But rehabilitation itself cannot rebuild a life. That part happens very slowly, mostly outside of what anyone formally teaches you – and it is entirely your own responsibility!

This, however does not mean that you cannot get help. But what I’ve learned; through time and through many admittances, is that rebuilding your life during illness is not about starting over from scratch. Instead, it’s about learning how to adjust to new, often unexpected aspects of live – without completely loosing yourself in the process.

Bringing your life with you

One of the most important things I have learned is that rehabilitation should not exist in isolation from your real life.
You are not just a patient – you are a person.
A person with hobbies, with interests, routines, thoughts, feelings and needs – different things that make your life yours – and makes it different from others’s.

So, whatever makes your life feel exiting to exist in; bring it with you!
Bring said hobbies, routines, needs and feelings; parts of your daily, weekly, and monthly life that still works in different settings. Habits that create structure, rituals that makes your daily life feel safe and familiar, instead of cold and overtly clinical.

For me, that meant bringing my cozy blanket, Apple Tv, laptop, camera and small decortative objects – so that my morning routine of journaling while drinking coffee and watching something on youtube; and my evening ritual of eating fruits, while relaxing to a liked TVseries is pretty much the same.
I use my cozy blanket when I sleep or relax, I workout at the same days, I buy groceries at the same days – and buy mostly the same stuff!
For someone else that might include bringing their iced-coffe maker, their sodastream for sparkling water – or a whole bag full of books.

For someone who’s never experienced longer admittances this might seem strange, but in reality it’s not. These things, whatever they are – are anchors to you, and to your life. They remind you that your life is not on hold, it has just changed location.

Knowing when to accept help

During an admittance, there is also a quiet shift that happens over time – one that can be much more difficult, especially if you are someone used to managing on your own. Because, slowly you begin to understand the difference between what you can improve, and what you should not have to carry alone.

Rehabilitation – in any shape of form is not about trying something harder, grinding untill the next massive disaster happens; it’s about opening up and allowing professionals to step in where you need it.
This might include talking with and working out with a physiotheraphist. It might mean neurological support, mental health care, structure – and not to mention guidance built on professional knowledge.

This does not mean that you have failed at life; it just means that you are choosing a way of living that is sustainable (as opposed to survivable!) – which is especially designed for you.

Living with illness is not the same as «giving up»

Personally, I’ve lost count of the amount of times certain family members would bite their teeth and complain that I’m still not seizure free – and «how are they not able to find something that ‘cures’ you of epilepsy – when XYZ became seizure free after a certain medication.
In reality we are all research-rabbits, and there is no way of knowing for certain how different people react to different medication, treatments or operations.
None of these things are witout risks – but we all hope they can help improve the parts of our lives we are unhappy with.

More than anything, this is probably the hardest part of rehabilitation. Because, the first way of improving your life, is accepting the difference between your own situation and what you once imagined.
This does not have to mean that your current life is worse from your imagination. Similarly, it does not have to mean that everything is meaningless. But you do have to accept the difference, and accept that this difference requires a certain re-balance in the grand sceme of things.

Living with illness does not mean letting go of ambition. It simply means re-defining those ambitions in a way that sustains your life properly, instead of completely breaking it apart.

So, if you are in said situation; ask yourself:
– What is possible for me (now), and how may I realistically improve those possibilities?
– What kind of life can I build that I can actually sustain? (and how can I do this?)
– What values/ morals/ goals matters enough for me to keep, even if everything else shifts and changes?

Remember; ambition does not dissapear and die through a variety of life experiences, they simply change shape.
And sometimes, with the right support, they become more realistic, and easier to reach then they ever were before.

In my own experience, especially through this admittance, with the help of professionals able to see things from a perspective very different from my own – my ambitions have only risen higher , yet seem easier to accomplish then they ever were before.

Gratitude, without illusion

There is one thing that needs to be mentioned, however;
the healtcare system (even here in Norway) is not perfect. Not even close.
In many cases there are gaps, delays, limitations and frustrations. And these things can most often only be felt when you are the one inside it.

And yet – I am still massively grateful.
Because, as someone who spent a large portion of my late teens – earliest adulthood moving position througout the world, I am fully aware that what I have access to is something many people do not. Many people navigate illness fully on their own, with varying resources, high uncertainty – and with far less support.

And gratitude does not mean ignoring what is broken in my own current system; it means recognizing what does exist, while also hoping for (and voting for!) – better.

What living with illness really means

Living with illness is not a single realisation. It is something you learn to deal with again, and again – over time.
Wheter this means learning to adjust your life to new situations, while still holding on to who you are, or learning to accept help when help appears. It might also mean resting more, without loosing all hope of future betterment, and rebuilding without feeling like you are starting from nothing.

This is not an easy pact. It does not happen overnight. And more than anything, it is not something someone else can fully teach you.

But it is possible!
And over time, piece by piece, it becomes a life (yours!) again.

– Silje 🙂

Paused, Not Broken

«On re-entering the hospital, and the kind of progress no one sees»

For myself, and for many people I know – there’s a particular kind of silence that arrives when you realize you’re going back to the hospital.
It’s not particularly ‘good’ or particularly ‘bad’ – it’s just there; like a quiet recalibration.

In able-bodied culture, hospital admissions are most often framed as setbacks. Or as proof that something went wrong; evidence that you failed to manage your life correctly. For those of us with physical/ chronic disabilities, however – this is not the case.
Sure, it might be that way for some of us, people are different after all – but I’d go as far as to say that for the vast majority of disabled people, hospital admissions is almost like a form of necessary maintenance strategy…
And later this month, this type of maintenence is coming back to me.

Now, I’ve already been admitted to the hospital many times in my life, and probably will be again, several more – but it always makes me feel hopefull yet anxious in the days and weeks ahead. Hopeful, that my doctors might finally find a way to make my epilepsy less apparent in my daily life, and anxious about collapsing my entire life again, without knowing how long. If this sounds too excessive – the last time I was admitted to a hospital, I ended up being there for almost 3 years!

This time I am being admitted to a specialist hospital that I’ve never been to before, and will probably be staying for several weeks, at the least.
Of couse, while this in itself is not the end of anything I’ve already built in my life, it does require a heavy pause from it.
And pauses, in a world seemingly obsessed with gaining momentum, is deeply misunderstood.

Progress is not linear when your body isn’t either
Disabled progress does not look like a straight upward line. Instead it loops, stalls, contracts or expands – moving in spirals rather than ladders.
And because of that; sometimes, the most responsible thing you can do is to step out of daily life and hand parts of your survival back to professionals – as maintenance without them becomes unsustainable.

Hospitals are often framed as places of last resort. And in many ways they are. Not because diabled people wait too long to mainenance, but because support is rarely offered before a crisis. So, while going back to a specialist ward can be proof that I’m still here, going for it – I won’t lie and say I’m not scared. Scared that I’ll get as ‘drugged up’ by wrong meds as I got the last time, scared that I’ll gain a bunch of weight without my usual training group, or scared that I won’t be able to come back to my daily life once finished.

The invisible logistics of being «paused»
While I am very happy I was able to be admittet this early on in the year, I’d be lying if I said it was all good, always. Because it’s not. What people rarely see, is that hospital admmissions don’t begin on admission day itself.
Instead, they often begin weeks earlier, with things to organize, meetings to move, appointments that must be cancelled or postponed.
Fort some people, finances must be adjusted; – and the packing! The packing for all the things you might need and want, all the while fearing that the routines you’ve worked hard to build will just fall flat; and make you build them again.

Being treated is not the same as being absent
One of the hardest things about re-entering the hospital, is how quickly disabled people are erased from public life.
As if we’re dissapearing from timelines , and conversations about the future, just because the systems around you don’t know what to do about people who need ongoing care – while also having ongoing ambitions.
But being absent from public productivity, is (luckily enough!) not the same as being absent from meaning.

So while I might be paused in one sense; as an example, I don’t know whether I’ll have enough time to write in my blog. However, other things will still continue in the background; ideas fermenting, recilience recalibrating, boundaries changing – hopefully turning me intoo something even stronger than before.

What I want ot say before I go
This is not me starting over – I’m just continuing down a different path, tending to the conditions that makes continuation possible.

If you yourself is someone preoparing for an(other) admission, a round of treatment, a pause you didn’t ask for – or anything of the sort, remember – we’ve all done it before, we can do it again!

– Silje

The real unseen: Living with an Invisible Disability

«There is no one way to look disabled»
– Emily Ladau, Demystifying Disability (2021)

Last week I wrote about ‘Disabled Pride’ – and about the radical act in taking pride in who we are, even when the world tells us not to. How disability pride can coexist with a queer identity – and how claiming space as both disabled and LGBTQ+ is a powerful act of self-recognition. But, as many of us know, pride can be complicated. This is particularly the case when you, like me don’t look obviously disabed. So this week I wish to zoom in on a different kind of visibiliy; one that sets the focus not on wheter society sees our pride, but rather whether it sees our disability in the first place.

For many of us, our disability isn’t outwardly visible. We may not use mobility aid, we might smile or nod our heads and «pass» as able-bodied individuals in passing conversations. Sure, I use filtered glasses daily for my light sensitivity (I have a couple aimed at different levels of light-protetion) – but to most people this just looks like I’m using sunglasses inside.

By «passing» as able-bodied on a relatively daily basis, random people will in turn treat you as such. The difference of course is that you’re not. And the effort it takes to function throughout the days; through pain, and fatigue, daily seizures, brain fog or sensory overload are all exhausting. But because most people aren’t aware of this, the disconnect between ‘looking’ and ‘being’ disabled leads to many actual problems.

In many situations, invisible disabilities can lead to being disbelieved, dismissed, or accused of exaggeration.
One of the most frequent examples from my own life concerns whenever I have to take the buss during rush hour. It is something I avoid like the plague, but every now and then it’s impossible to do so. Firstly because busses is the closest and safest method of travel to where I live. Secondly, due to my epilepsia I am not allowed to drive a car – so busses is the only close way of travel for me (safe or otherwise).

So why do I hate taking the buss??

First of all, its a closed, tight space filled with excess lightening, all kinds of smells and (often) alot of noise. These are all things that my brain reacts to, and leads to larger seizures. The amount of times I’ve woken up in the middle of a buss-aile to a bunch of terrified passangers and a buss-driver kicking me out of the buss and intoo an ambulance is immense.
Usually, the only way I’m able to avoid seizues is by sitting close to a window trying to sleep while listening to music.
BUT during rush-hour, seating is first and foremost for the elderly, for pregnant women, for young children, and for the disabled. BUT I DON’T LOOK DISABLED!
Of course, I could scream it out intoo the buss that I am disabled and need a place to sit, please! But when you don’t look like other people’s perception of disability ( I mean, I even wear red lipstics and nice clothes! …..) then you’re not likely to get very far with that.

So quite often, when standing, I am forced between making myself look more poorly so people can see that I am disabled , or litterally being on the phone with my mother the entire bussride, just so that I would have something else to focus on – and so she’d know If I had a seizure.

As author Emily Ladau reminds us in her book Demystifying Disability:

«Disability doesn’t always look the way people expect it to. You can’t always see it, and that doesn’t make it any less real»
– Emily Ladau, (ibid).

There are many examples like my struggles with public transportation. And while some are hard to explain, and others hard to understand – they all tend to build up. They can make you doubt yourself, and make you question whether you’re actually just lazy. Due to this, invisible disability comes with an added layer of emotional labour; of constantly deciding whether to disclose, explain or stay silent about your condition(s).

Over time, I’ve come to understand that the issue isn’t just a misunderstanding by the general population, it’s also a mistrust.
The level of mistrust varies between countries, depending on a number of other societal factors – but even in a country like Norway; a country where social trust is higher than many other places, mistrust in the reality of what cannot be seen still exist.

Many people assume that if you’re not visibly disabled, you’re not «really» disabled.
But disability is not a performance; it’s not something we owe the world a demonstration of.

Image «The Real Unseen»
by S. E. Y.
____________________________

According to research, 1 in 4 adults in the USA (roughly 61 million people) has a disability according to the CDC. This number is based on data from the 2022 Behavioral Risk Factor Surveillance System (BRFSS).
Furthermore, out of these a significant portion have invisible disabilities, including chronic pain, mental health conditions, neurological disorders (this is where epilepsy comes in) and more.

In the U.K, a study by Scope found that 67% of disabled people reported being stared at, questioned or disbelieved when using assecible facilities like parking spots or toilets – because they didn’t «look» disabled enough.

The Invisible Disabilities Association reports that up to 80% of disabled people live with conditions that are not outwardly visible.

Sometimes people with invisible disabilities face skepticism, even from other disabled people. Many feel this pressure to ‘prove’ themselves ( I know I have!). There can also be feelings of resentment if you can pass when others can not. These are all real tensions, and they are all extremely painful.

But here’s the truth; disability is not a competition. Visibility doesn’t make you more or less disabled; it simply removes some struggles, and adds a bunch of others (and vice versa).
Our experiences might be different, but our needs – and our dignity are valid across the spectrum.

Last week I wrote that Pride means reclaiming space. For those of us with invisible disabilities, this type of pride might look quiet. it might be refusing to apologize for asking for help. It might be saying «I need a break» without feeling guilt. It might be using a disability-related pin, parking permit – or asking someone walking with you to slow down, withouth offering a medical history as proof.

So know that, if you live with an invisible disability: I see you!
If you’re learning to balance ambition with chronic limitations: I see you!
If you’re tired of explaining, defending yourself or being disbelieved: I see you!

Because, disability is diverse. It is valid. And it deserves space in every conversation – Including PRIDE. Because in the end, real pride doesn’t require evidence – it requires courage.

– Silje

The Quiet Courage of Being Ourselves

Courage is often portrayed in sweeping gestures. You know, the soldier in battle, the activist at the podium, the climber on a windswept peak. Yet for many of us, courage shows up very differently; In the quiet, often unglamorous acts of self-honesty, and in the choice to live with honesty and integrity, despite being in a world that often resists the truth of our existence.

As disabled people, we often face a unique pressure: to fit into a mold that was never built for us. We are taught, explicitly and implicityly, to mask our needs, downplay our differences, and strive to be «normal». I should know, I’ve done it all! But what if courage isn’t found in becoming something else, but rather in daring to be fully, visibly and unapologetically ourselves?

As mentioned in a few previous posts, I was quite the ‘weirdo‘ from early on. From the several daily small seizures in the middle of primary-class (at the time still undiagnozed) which made my teacher think me both dumb and a troublemaker, and made my friends confused, to the daily times I chose to sit by myself at the beginning of the school forrest. Sure, on the one hand this was (as mentioned) due to me refusing to play with the kids that would bully me a few hours later – but It was equally in order to sit alone and reset my mental and emotional battery – which as a an epileptic, very easily runs out, by all things going on in the average schoolground.

Later in life, as I entered University – I simply made it a general point to tell everyone of my epilepsia (still do!) Because, it’s not a question of «if» I get a seizure, its a question of «when» – and when you have several seizures every day, it’s impossible to actually live a life without being preopared for it to come. And for me, that in itself is a sign of courage, as I refuse to roll over and die just because some people would rather pretend people like me don’t exist.

For anyone interested in learning more about this, and the several other ways that embody the lived experiences of disabled people, I would strongly reccomend Robert McRuers book «Crip theory: Cultural Signs of Queerness and Disability«. The book is one I myself used for my MA-thesis in the heritage of disability on display, and works as a framework that reclaims disability not as something shameful of pitable, but as a powerful, complex identity. With it McRuer encourages us to challenge abelist assumptions, to disrupt expectations, and to embrace our bodies and minds as sites of wisdom and resistance.

Believe it or not, this is one of the ways the concept of ‘passing’ originates from. From both disabled (and black) people either pretending to either ‘pass’ as an «able-bodied» (or white) person – or quite strongly reisting to do so. Personally, I’ve done both, greatly depending upon the situation and what is physically the safest for me.
As Audre Lorde once wrote, «Caring for myself is not self-indulgent, it is self-perservation, and that is an act of political warfare.» (A Burst of Light, 1988)

In the same spirit, choosing to center our needs, speak our truths and shape our lives around what sustains us is not weakness – it is defiance.
To live with integrity as a disabled person is to resist a culture that insists we hide. It is to claim our space, tell our stories, and believe that our truths matter.
You are already courageous. Every time you ask for help, name your boundaries or simply exist without apology, you are practicing a radical kind of bravery.

From Eli Clare’s «Brilliant Imperfection: Grappling with Cure» (2017)

«I want a world where we value interdepencence over independence access over ability, justice over cure. Where disabled bodies and minds are not seen as broken but as deeply valuable. Where difference is not something to be overcome but rather something to be voven into the fabric of our communities».

Take a moment today to recognize one way you showed up with courage. And if you feel like it, share that story. You never know who needs to hear it.

– Silje