The haunting

There she goes…

The tightly-bound threads are loosening, unravelling. I’m unravelling. Little by little I’m making less sense of this disease and more sense of the scale of its destruction. I’m angry, sad and hurt. It hurts to look back and think of just how much it’s robbed from me, to watch my ghost lace up her runners and race out into the crisp autumn morning. Every fibre of my body aches to be her.

I feel like this is a nightmare I’m going to wake up from. That the walking stick, the wheelchair and, most of all, the pain, that they can’t be permanent … can they? Yet they’ve become a part of who I am now. I spend so much time behind closed doors, my day stripped back to a level I can cope with. On the better days, the days the disease is invisible to the outside world – never to me – I put on my make-up and I venture outside to the shop or into the office. But on more of those days, I’m behind closed doors nursing my broken body, bargaining with it for time.

I fight it day in, day out. But I rarely win. It’s like swimming against the current, I keep paddling just to stay in the same spot, stop for a split second and I get swept away for miles. It takes so much energy and sometimes I want to stop the battle, I want to curl up and sleep and forget that this is happening to me. I want to look back at what I’ve lost and for it not to hurt this much. I want to look forward with excitement rather than this fear. I’m tired and I’m weary on this road. I don’t feel brave and if I look ‘good’ it’s because I’ve gone to great efforts to look that way. To hide my pain from the outside world, to filter what I show. The Rosie who sits at home looks sick, she curls up in a ball during the week and cries when the pain gets too intense. She’s frightened. She can sometimes barely climb the stairs, each limb filled with lead, out of breath just moving from the couch to the bathroom. I feel like I’m muddling through, like I’m barely clinging to the strings that tie me to the world, to society.

I’m sick of counting out tablets everyday and filling my system with them just so I’m able to move and live in a little less pain. I’m sick of the isolation and the heart-wrenching loneliness that comes with a chronic illness. I’m sick of being tired and of everything taking so much effort. There’s days I want to nap and I’ve only managed to get as far as making breakfast,

It hurts so much. I physically ache for what has been lost. The hauntings from old Rosie have become more real of late. She runs around the parks I barely managed to shuffle around. She dashes through town and in and out of shops with ease while I battle crowds in my wheelchair – invisible at home and invisible outside of it!

I HATE you MS. Look what you’ve done to my body. Look what you’ve left me with. Look at the fights that lie ahead for me: trying to cope with my illness and struggle for recognition and equality in a society that considers disabled people less – worse than less, it doesn’t even consider us. I just want to be me again, I want to act on the dreams, the desires and the impulses that still course through my veins.

And yet the life I live now is far more full of meaning. Of love like I’ve never known love. Friendships built and strengthened in the face of adversity. I am more passionate about the beautiful world that surrounds us and more ready, on the good days, to leap out and grab hold of it with every ounce of my being. And I know, each time it gets hard, the old Rosie doesn’t just haunt me with what’s been lost, she leans forward, embraces me and whispers: You’ve got this!