“Who is she and how can I be her more often?”, the phrase in my head when I looked through the photos I’m sharing with this post. As I sit in the garden to type, our small wooden table is covered with the rain from only moments ago (so my laptop is living up to its name by sitting safe and dry on my lap) and the sun is warming my floral-jumper covered chest. Jumpers and sun cream, I do love this time of year.
I’m sure there’s more than one of me
I suppose everyone feels this to some extent, that there are different versions of you; some you’d like to be more often and others you’d rather bury in the newly damp, late-summer earth. Personally my versions of me and ways of life are tied to my fluctuating health conditions and so-called “monthly” cycle (I mean, it’s more regular than it once was but I wouldn’t design a calendar around it). The 10-day pre-period fug followed by the 7-day actual-bleeding marathon (Cross country endurance run? Or maybe trip up the stairs, that can be difficult enough) almost have me forgetting there are any other weeks to the month. Then I emerge from it all wondering why I suddenly feel like I’ve found a lost version of myself, one who is capable of emailing a dentist and deciding what tea to drink… Without questioning the meaning of life or collapsing (at least, not any more than I usually expect from my disabled self).
Can I plan my way out of these inconsistencies?
The disassociation, disorganisation and dissatisfaction of the last couple of weeks can be put down to symptoms of wider circumstance, as opposed to any fault in my commitment to that planning notebook I set up (I drew two little boxes for each day and everything: one for important/main tasks and another for the itty bitty reminders). But we live in a world that wants us to be as consistent as we wish our Instagram feeds were (or is that just me?). A world which sells us planners (and points us to inspirational bloggers who use them in an ‘aspirational’ manner) and throws articles into our scrolling paths about how finding YOUR STYLE will bring that sense of satisfaction you’ve always craved. We long for life to make sense. But nobody is that neat, surely? Everyone feels at odds with this pressure to see finding a “sense of self” as a branding exercise, don’t they?
How dare my condition fluctuate!?
All this confusion that we call being human is magnified ten fold under the microscope of life with fluctuating disabilities. I can’t cast myself as the neat one if this neatness is set to fall apart next week when I can barely dress myself, let alone tidy yesterday’s outfit away. How can I decide to be a tireless activist type if I’m always… Tired? What internet circle is going to recognise me as a musician if I never deliver the musical videos I promise?
It’s difficult to reconcile the way I actually live my life with the person I imagine myself to be. Especially when trying to do so in a consistent manner. Which brings me back to these photos and the questions I asked myself at the beginning of this post: who is she and how can I be her more often?
Who is she?
In those photos -the ones taken in my garden- I felt like smiling. I wasn’t over-thinking some guilt around activism (you know, the self centering kind of guilt that does absolutely no good but often seems unavoidable?), I wasn’t worrying unnecessarily or questioning the point in my own existence. That worry and habit of questioning life though, they’re easier to skirt around outside, in the fresh air and gentle evening sunlight, wearing a favourite outfit. Easier, that is, than they are to ignore when sick, sick, sick in bed. Unable to tolerate light, unable to read, learn or play music. So now I ask, under those circumstances:
How can I be her more often?
This is my reason for including the photos in my bedroom, dimmed light filtering through my closed curtains. It’s hard to see myself as one person when I feel unable to “be me” for a massive part of each day. These pictures are no representation of hours in bed or crying on the floor but they are a middle ground. They are my attempt at being “her” (you know: me) during the hours most outside observers write off as lost to the sickly abyss.
What I’m asking from myself is a change in my demands for evidence. What am I on about? Evidence, productivity, achievement, you know the stuff. I can’t keep asking myself for this in order to prove I am who I believe myself to be. There isn’t an all-encompassing answer to this, a simple fix. Even for those who aren’t disabled. But there are nice clothes, moments in gardens and times spent typing blog posts. On occasion, these serve only to make the sad times more difficult to understand. Because we’re taught they just don’t go together in one day, in one person, in one life. But they do, for all of us. I still don’t know how I’ll accept this and be more flexible with how I express my identity in different states of health. I only hope that I will manage it, and feel content with that (for a while, anyway).
With love from one sleepy tornado of contradictions to another,
Until next time
-Sakara.
