Share a story – Sakara

It smells like summer. Summer at the sea with the van door open. Summers with my parents before I grew up and wished I could spend some seasons without them.

I have the window open, fresh air swirling in with the autumn breeze. For a moment I think that’s all the illusion is: late afternoon fresh air feeling like a summer evening. Then I realise what I’m drinking; a concoction reminiscent of the thick, dark coco-like liquid that calls itself hot chocolate from my favourite car park cafés. And I’m wearing sun cream, barely scented, but familiar enough to take me back. Also, I’m kind of happy. Calm, at least. It’s rare that I can sit here with the window open now. I have two cats who would nosedive out of it, given half a chance. I miss this. I couldn’t be without Clover and Maxi, but I do miss evenings like this.

I’ve lived a lot of my life looking out of this window. Or longing to; in bed, in the dark with curtains and blackout blind closed. Blocking out light that burns my eyes or just makes life, conversation, anything… Impossible. I need it to be quiet too. Children playing, heating systems whirring, all shut out by the double glazing. Aside from on good old evenings like this. In more recent years, I’ve penned songs in this room. About playing guitar in the dark “how many hours have I spent now…?” in the dark, in this room, by this window. Watching another sunset through shielded eyes.

How many hours have I spent now

Playing guitar in the dark?

How many hours have I known now

With windows closed to the lark?

I love early mornings. I spent just over 5 years living this little life of mine, before I became seriously ill. But of the few things I remember from ‘before’, waving my dad off to work is one of them. My mum’s filled in the blanks about 7AM supermarket shopping trips, and never having a problem getting me out of bed. But that, that was before.

The time I wake up has varied for as long as I can remember, as though it’s working on some kind of cycle. Like I have 4 alternating sleeping patterns rather than 1. But now, the early time is earlier than before. Better than the days when I couldn’t sleep until 7AM, then awoke when winter days were drawing to a close. Yes, a little better now. But the sleep is still non-restorative: I wake up tired, whatever the time. I can’t live up to the promises made in the simplest of to-do lists. I can’t craft the actions needed to bring my dreams into reality, even when those dreams are short daily walks. Sometimes, I feel like a computer without the processing or battery power needed to run the software marked ‘me’.

How many birthdays?

How many dreams?

How many shoes,

Never crushed autumn leaves?

My life is beautiful. I remind myself of this often. My friends are kind, creative and loving. My online community -mostly comprised of fellow sick and/or disabled people- is artistic and supportive. My pets are gorgeous, and everybody seems to like me. Which can’t be true, but seems to be on first inspection. I’m so rarely, truly happy though.

The pain is a part of it, this illness itself. But when I look around at my childhood and teenage years, I understand why living to my 21st birthday surprised me. Not only because of all the childhood hospital stays and physical symptoms. But because of the lack of understanding, the support systems that are often there on paper, but not made available in reality.

It’s hard not to notice the lack of “official” support for people with M.E., and the way that communities and charities often step in to bridge this gap that shouldn’t be there. From mental health support to providing mobility aids. That’s why I was honoured when Smile For M.E. asked me to write this post for them, because they’re a charity and a part of my community. I remember their posts with the polka dotted wrapping paper reminding me how much people care, brightening up teenage-Sakara’s Instagram feed, and therefore her day. Because, most days, that phone screen is the only outside world which is accessible to me. And because we need all the metaphorical light we can get, when the literal stuff hurts.

Currently, things are neither as bad or as good as they’ve been for me in the past. Everyone is struggling in some way or another right now, but for anyone with a chronic illness like M.E., the periods of isolation can be even harder. Sometimes because they remind us of times passed by, sometimes because it’s an isolation we were still living anyway, imposed by bodies and inaccessibility, regardless of other outside circumstances.

How many hours have I spent… Now?

-lyrics (in italics) are part of a song I wrote a few months ago. I hadn’t shared it anywhere (yet) but this felt like the right moment to do so. Some day I hope I can sing it to the sea, sitting next to a hot chocolate, wearing suncream and a hat and glasses, to shield these tired eyes of mine.

Thanks for reading,

Sakara x