An unwanted change of identity

That’s what it means to become disabled.

It doesn’t matter how quickly it happens. Whether you become disabled overnight in an accident or you spend years slowly declining. There always comes a moment when it hits you really hard: the person you identified as, that you had imagined to become; that identity just gets pulled from under your feet and, suddenly, you don’t recognise yourself anymore.

MS has been creeping up on me, slowly, stealthily. I can’t say I haven’t noticed it, and I have even talked about it. But occasionally, something triggers inside, and I have a moment where it completely blindsides me. I call it a wobble, but that really doesn’t do justice to how desperate I feel in that moment. I call it that to help explain it to my loved ones, to placate them and myself.

Exploring that feeling for too long is too painful, and frankly, not overly productive, as it doesn’t actually help change anything. What I try to do instead, is what all the experts tell me. Be gentle with myself, acknowledge that MS is hard, have a good old cry if I need to and then focus on the positives.

This is where a wobble helps. It helps to refocus on getting back to doing things that make you feel better, especially if you’ve let them slide a little. Mindfulness, meditation, journaling, gentle exercise, time in nature etc.

But it doesn’t change what is the real problem.

The real problem is that I hate being that person who needs special adjustments because they can’t walk far. I hate being limited. I want to go on weekend hikes again. I regularly have dreams at night where I can suddenly run again, and it feels easy, like it used to. A cruel dream to wake up to.

It makes me wonder if I have processed my diagnosis at all. Or is this another punch in the gut by this cruel disease? That you have to come to terms with new parts of your body declining, every time it happens. Over and over.

I used to be a positive person, but it’s honestly draining. And anything I do these days, my first thought is always about whether I’ll be able to manage it physically. I watch people do the simplest things with desperate, envious sadness. Like walking in flip flops, jumping over waves, and playing an impromptu game of rounders at the park. Simple, simple pleasures that you enjoy spontaneously without a second thought.

So I’m back, mourning the person I used to be and the person I planned to be. I have lost my identity, and I am not ready to embrace this new one that’s forced upon me. I don’t think I will ever be ready.