national myalgic encephalomyelitis awareness month

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“A hashtag has just made me cry, which seems like one of the most ridiculous sentences I have ever uttered. Yet, here I am, unable to comfort myself, while I type this.

The tag itself is ‪#‎millionsmissing‬ and it links to a protest being staged this month for the lives of those with M.E. Lives like mine. The reason I am finding it so moving, is that it articulates a part of my experience that I have never had words for, and it makes me aware of just how many others understand it too.

For years at a time, we went missing completely. Even though we were always in one place; the dark of a room, with only the most vicious dragons for our company. Every sound and beam of light was a knife cutting through us with dreadful accuracy. For thousands, and hundreds of thousands, of minutes we were static and unresponsive and silent but there was no respite for us; not for a moment, because the terrible chaos we were experiencing never needed to stop and take a breath. However much we wanted it to. Existing was so physically excruciating that it seemed impossible to continue doing so. We were in the lands between life and death where there was no one but us, and the dream of being near to other people again. A dream so beautiful and neccessary, it has sustained us.

I went missing overnight. Faded out of a life I recognised and into another I did not. I still do not. You learn, as you go along, how to be fierce enough to survive this with who you are intact. It will take everything, it will strip you to the bones and still keep raging, with no mercy in its onslaught, and you are powerless in the face of its enormity, but then you realise one day that you get to choose. You get to choose one last thing; whether or not the small spark of light that belongs to you, and you alone, is snuffed out with it. You learn how to hold on to whatever it is you believe in enough, to still keep who you are alive instead of just your body.

You will never reconcile to being missing though. You will never wake to find it normal. You are always yourself, displaced, in this terrible new place you have no maps for, waiting for your real life to come back to you. The one where you can run and dance and reach out to put your arms around those who matter.

Perhaps the hardest part is simply the lack of practical help. The doctors are as out of their depth as you are. They can offer you nothing for your pain and, invariably, they cannot treat you. So you are exposed to an illness unchecked. You must face the storm, without a shelter.

You become so very aware of how much pain there is on this planet and that there is no more reason for your miracle to come than anyone elses, and you hope it comes anyway, because this is the only span of time you will ever have.

I do not want to stay missing.

And I do not want other people’s lives to go missing too.

But I have no idea how on earth to stop it from happening to someone else, when the voices most raised about it are the ones who are being made to whisper by this disease.”

~ sarah-louise jordan

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