Where Does My Future Lie?
Phoenix by Sandara
This month is my seven year bediversary. Seven years of being mostly confined to bed, looking at these same four walls. It’s gone in the blink of an eye, and yet my old life seems like a lifetime ago.
When I think about the future too much, I have a Panic Attack. An “I can’t breathe, am I having a heart attack?”, capital P, capital A, proper panic attack.
I worry about what will happen to me, what sort of life I’ll lead. I only leave the house for medical appointments and hardly have visitors. At the moment, I live with my parents, but they’re elderly. I worry that I’ll end up living alone and seeing only paid carers. I worry that I’ll become that strange old lady who doesn’t know how to talk to people anymore, because she’s out of practice and spends too much time alone with her cat.
Already I have so few friends left, and it’s hard to make new ones these days.
How do you plan a future when your options are so limited? My visionboard would be pretty empty! No dream houses, travel, exciting goals. Just the fervent wish that I don’t ever lose my disability pension or get kicked off the NDIS (assuming I ever get on it). It’s terrifying to be at the mercy of government whims and policy changes.
I’d love to say that when I think of the future, I see great research funding, good diagnostic testing, and effective treatments. That I see me and my fellow MEeps having better health and being able to start building better lives. But the truth is that I struggle to see it. Not because it won’t happen, I really hope it does, but because it’s scary to get my hopes up.
Don’t get me wrong. There’s a big part of me that does hope, that invests my limited energy into trying to make things better for us. And we’ve made good progress. Research is progressing, understanding of the condition is improving, but we’ve got light-years to go.
I identify with the phoenix rising from the ashes, and hope that one day that will be all of us.
But the future feels hazy, out of focus. Or maybe it’s too clear and I just don’t want to look at it.
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