Living On Lost Time

Hello, it’s been a while since I heard the continuous clicking of laptop keys under my fingers. I’m glad to be back. Given the time that’s passed and the fact that I’m using a new website (more on how this came about in a future post) re-introductions feel appropriate.

My name is Sakara.

I’m 19 years old at the time of writing (born in mid 2000, so take a look at the year -remember to subtract two thousand!- and you’ll never be more than a few months off my true age).

I’m a singer and songwriter…

… Recent guitarist and plans-to-be pianist (you’ll occasionally catch me singing along to a keyboard, with little idea what chords I’m actually playing). My work and seemingly endless passions are all tied together by feeling. Feeling and a tendency to ramble on instinct. My music is emotive yet loose on timing and structure (working on it), my blog posts are too long, a dear friend described even my emailing style as “a stream of conciousness”. I love clothes which have just the right feeling too. These are often vintage or second hand. There were moments of leaning towards a 1950s style, but I’ve settled with more comfort into my own twists on something approaching a ’70s feel. A feel that was recently disrupted when I found joy in the clean cut silhouettes of striking blazers. The vast majority of photographs on this site will be my own, my photography is influenced by the fuzzy edges of analogue photographs, the tactile nature of film. Though I currently shoot digital to keep costs and anxiety to a minimum.

Recently, my mental health broke down. I won’t discuss this in detail, not right now, possibly not ever (though keeping anything back is not something I stick to well). But I will share the wider context of what I have been going through and many of the realisations it lead to.

I’m disabled.

Growing up, since the age of 5, I was surrounded by adults (mostly medical professionals and educators) saying how my strength would improve with age, that the fatigue induced by M.E./C.F.S. was a temporary state. I would write songs, store them up for ‘future Sakara’. I made plans, I realised I might always “get tired easily”, but never imagined an adult life featuring a wheelchair or any major adaptations- beyond a standard part-time work schedule. I saw my childhood as the lost years. When people comment that I picked guitar playing or manual photography up fast, I say I’m “making up for lost time”. I would set challenging, demanding goals in order to feel I’d got something back from these years. I couldn’t be a happy, healthy child so I’d be the most mature child, the one who wrote a book or made a scientific discovery. I understand why chronically ill people (myself included) talk of having lost their lives to these illnesses. But is this really fair on us? Are we doing our existence justice with this narrative? I’ve lost so much and I would never tell anyone else they don’t have a right to grieve for the life they would’ve had. It’s a massive and traumatic loss. A continuous loss. But to be told implicitly that every day you wake up as a disabled person is a day completely “lost”, what room does that leave for purpose? What room does that leave for self worth, for dreams and hope? It leaves no room at all.

The way I live is a valid existence.

It is worthwhile. My own efforts to raise awareness of my condition made this hard for me to believe. I am not missing from this world, representation of myself and millions like me is what’s missing. Respect, belief and medical research is what’s missing. Access to housing and adequate funds to live on when unable to work in the conventional way is what’s missing, not me.

You can’t borrow time. I felt a little like I had, for a few months there, like I wasn’t supposed to be here any more. Not dying but not recovering either. Somewhere in the middle. Simultaneously borrowing and loosing every day. But I’m not. I’m living every day. Even the ones where all I’m well enough to do is survive. I’m living on what they claim is my lost time. I’m living every second of it.

With the voice I have, I’m determined to set right this story which hasn’t been mine to write. There are more limitations in my world. There are days, weeks, months and years where I feel I’ve been denied access to myself. When the healthy Sakara I imagined feels more real than the exhausted wreck of a girl I’ve lived most of my life as. Times when I struggle to align my sense of self with my actions because I’m so inactive. Or, you know, laying on the floor screaming about something, unable to hold a reasonable conversation with myself, let alone anyone else. I can’t always express myself the way I want to, I can’t always access my own work or even imagine what I would create and achieve if these limitations were lifted. But I am here, I am a part of this reality. I know it’s hard to accept that for many ‘getting better’ is not a realistic goal. But think about why that is, think about why the world is so scared to admit that we are all fragile and fallible and yet worthy, regardless of our ability to work ‘for a living’ or align with social expectations.

We live in a culture obsessed with selling us self improvement,

youth and endless vitality. So hi, if you think youth is wasted on the young you might like me because I’ve never had the full, stereotypical, experience of mine. Hi, I’m a disabled woman and I’m not dedicating my life to ‘getting better’. I want more strength, I want less pain and an easier life. Being sick is difficult, I’ll never deny this. But damn every phrase which frames it as an unworthy existence. I’m living these lost years to the edges of my abilities, and this life? It’s a beautiful one.

Though, before I wrap up this post, I must note that there are many with less freedom, less access to themselves than I have. As I wrote that sentence I was meaning because of their conditions being more severe, but financial difficulties, a less supportive family and other circumstances have massive roles in this too. There are many for whom my worst days are their every day. That isn’t something we can just push aside with a smile and a song. Especially at those times when noise sensitivity makes music an impossible pleasure. So please know when I say things about the beauty in life with an illness I am never meaning to invalidate or hide the pain.

I also want to make the clarification that I’m not “fighting” or “overcoming” my disability in order to live this life. It stops me in my tracks every day. Recently my sensory overload has been overwhelming. To the point where I’ve hidden in our empty bath. Crying with the bathroom door shut because it’s more contained, easier than being in my room. What I’m saying is that a life containing all these moments is still real. A life like this is not disposable. It’s worth as much as any other. I’m worth as much as any other.

Check back for more posts like this one, personal rambles, impromptu softly-sunlit photo shoots and other pieces with a different flavour. I know I tend to gravitate towards projects I can complete without conducting any research or putting in too much groundwork, so I plan to challenge that on occasion.

I’ll leave you with something I live by; the conviction that framing a desire to “change the world” as idealistic and naive doesn’t serve anybody well. Every word we choose, every decision we make changes our own personal world. Each personal world contributes in unimaginable ways to so many others. Change your world, change our world. It’s possible when we support each other. Possible to change the world, though in slightly different -and more subtle- ways than we imagine as optimistic children.

Until next time,

-Sakara.