When I started formulating this blog, a few months into Anja’s relapse, things were bad. Anja was in bed 23 hours of every day, unable to read or watch TV, unable to speak – hanging onto the world by a thread. All following an attempt on her life by the amazing – and so far unmentionable – Dr Death (we’re not going to name him, but you will hear more about him).
Nearly a year on, and Anja is recovering so, so well. She’s out of bed for most of the day, can be out for up to 3 hours (on a good day mind), and can even go for 5 minute swims at the local gym.
There was a moment in the autumn when I started to recognise my sister again, and I stopped feeling like I was banging on the door of an empty house, knowing she was in there somewhere.
If you’ve had experience with this fabulous illness you probably know what I’m talking about, and how it feels when the lights start to go on again. It goes without saying that its the greatest feeling imaginable. You’re relieved because the threat to their life is less huge, and you get to welcome an old friend back.
So then the question changes. Because suddenly the world looks different.
Anja is no longer trying to survive. She’s stabalised, and – touching ALL the wood – recovering.
So the question changes. Its no longer how will I survive. Its ‘what now?’.
Before last spring, we’d all got comfy because it had been a decade since the great CFS world war one (age 16).
But what was once The Future, is now the (ME / CFS) future. One so complicated it can’t even be named under one banner.
What does the world hold for a 26 year old who can’t work a 9-5 without battering her body into 12 months of horrific, life threatening sickness?
What does society hold for someone with an illness which isn’t properly recognised, an illness which entitles her to the princely sum of £10 a week from the state.
How can you trust that all the boys aren’t Dr Deaths, waiting (months, years) till your darkest hour to shoot you in the face?
Where can you travel without damage? Who can you trust? How will you live?
As the worst of the psysical receeded, the idea of the future (non existant, incidental, pinned down) crept back in, and I’m watching it avanlanche on her: inevitable, overwhelming, desperate, impossible.
I might know that there is always a place in the world for beautiful, creative, hard working, charismatic, good people. That she’ll never struggle for money because she has the imagination to understand and work with her limitations. That she’s so surrounded by people they’d never let that happen anyway. That boys are often trouble, that she’s seen the worst of love, that there is always one that will make the world make sense instead of destroying it.
But then who the fuck am I? And what would I know anyway? My wisdoms collected from common colds and 2 day hangovers.
So what started here as a lifeline to the outside world, for my sister who couldn’t be in the outside world, still feels like a place which can’t reach her.