On grief, ordinary lives, and learning to build a life that actually fits you
I think one of the hardest things about illness is not always the pain or unpredictability itself.
Sometimes, it is the quiet loss of scale. The realization that your life may become smaller, move slower and be more contained than you once imagined.
Whether we personally agree with it or not, we live in a world currently obsessed with ambition and visibility. And the- (to me at least) unfortionate practice that constant movement, whether foreward or backwards, is the only way to go.
Part of this we are taught from childhood, that meaningful lives are (always) big; filled with travel, with sucess, with movement, noise, achievement, and constant expansion.
So- what happens when your own body no longer allows you to expand? When survival itself requires limitation?
According to most of the popular movies I watched growing up, those incapable of living big – and incapable of expansion, would simply roll over and die. That way we the viewers, wouldn’t have to ask questions about sustainability and practicality – for no one in need of those explanaitions were alive anyway.
So for a long time in my teenage years and early adulthood, I though the «expansion» of my disability, was me being punished for not following ‘normal’ life protocol. I travelled instead of studying, then studied instead of settling, and as my disability got worse, I didn’t roll over, give up or give in to being treated poorly.
Don’t get me wrong – I was still grieving, just not what I was preopared for.
I though I was grieving a future that illness had taken from me;
– Careers I had imagined
– Energy I had assumed was obvious
– And the version of myself I thought I was destined to become.
Over time, however, I have started to realize something rather interesting;
that this person never really existed.
Instead, she was an idea; a projection of me, built almost entirely around what society values; like productivity, independence, high achievement and speed.
Because, when the truth is to be told, I do not actually want a life that destroys me in the process of sustaining itself «according to social protocol». And I do not want a career that I cannot control.
Now, don’t get me wrong; parts of said dream were real.
I have always been ambitious, I have always had many ideas and many creative suggestions in life. But – I have also, always been slow in doing things. And done said things, built entirely around an energy that constantly wanders up and down.
And because of this, I do not want a life so large that I cannot rest inside it. Or so large that I cannot be there for my family or my friends.
From a disabled person’s perspective, I think this is something we are (litterally) forced to understand earlier than most people.
We learn, often painfully so, that life has to be meaningful without being massive.
That joy can exist in very small spaces.
Through the work of quiet apartments, or stable routines. Through books stacked beside your bed, or a warm morning coffe/ tea. Through writing a blog – (Hello! xD) and doing so at your own pace, or even just creating something meaningful from your own home.
Many people dismiss these things as «small» – and therefore pointless or unessecary. But every decade, a bunch of books, education and health-related research point to these small things as the foundation of everything else positive in your life.
And when I look at the people I know, who’s lives are the fullest,and happiest – they’re most often built on these tiny, practical daily elements.
The exhausting expectation of being extraordinary
Despite this, many societies rarely allows disabled people to simply exist normally.
Instead, we are expected to be inspirational. Expected to be resilient – and, more than anything, expected to be both positive and productive, on line with everyone else.
Not to mention, endlessly grateful – for being allowed to be alive!
Now, I am not claiming that disabled people can’t be these things! Some are, some aren’t – we are as different as everyone else in the world after all.
But it seems as if ordinary ‘disabled existence’ is not enough on its own. As if we must constantly prove that our lives still hold value.
However, the more I think about it, the more I begin to think there is something deeply cruel in these expectations.
Because, it teaches disabled people, regardless of who they are – that in order to step out of ‘unjust lines’ (which is nessesary for human evolution), we must first earn it. That acting slowly must be justified. That our lives are only respectable of they overcome themselves.
And perhaps that is why so many of us struggle to accept quieter lives – not because they are bad, but because we have been taught to see them as less worthy.
Why our spaces matter so much
I also think this is why many disabled people become deeply attached to their environments. To our routines, carefully organized spaces, comforting objects – lightening, textures, books and decoration (or lack thereof!). To some this is simply practical: a wheelchair needs easy space to get around, a blind person needs to know where to find things, a light sensitive person needs less bright lights, and a person with easily broken joints need softer spaces in their environments.
From the outside I bet my own space can seem excessively organized, or unessesarily decorated; but to me, a calm and quiet space is very important in order to rest. When your body is unpredictable, your closest environment becomes a form of stability. It becomes something you can shape and change at your own will – when everything else seems out of your control.
There is a reason I bought certain decorations, technology and familiar items with me to medical rehabilitation: the way some people bring coffee machines, blankets, candles or favourite mugs.
They are things than can ground you to a new environment, with the use of an old routine. They remind us that we are people – not just patients. That our lives belong to us.
And maybe that is part of what I am slowly learning now; that a meaningful life does not have to look impressive from the outside.
It does not need to be fast, or loud, or endlessly productive.
It just have to be livable.
A life where your body can breathe, your nervous system is not constantlty at war with your surroundings, and where ambition exists alongside rest, instead of replacing it entirely.
And when one thinks about it, perhaps that kind of life is not small at all.
____________________________________
A task for you, reader!
Tonight, look around the space you live in and ask yourself
«What part og this space makes me feel the most grounded; the most like myself?»
Maybe it’s something as small as a chair, a blanket, a shelf of books, a routine you follow, or even a calm corner…
Whatever it is, allow yourself to appreciate it as a beautiful part of the life you’re building.
Because, whether quiet or loud, big or small; all lives deserves beauty!
– Silje