It creeps up on you, the realisation that you will never feel ‘safe’ again. Not in the easy way of the time before you got MS.
Of course all of us feel unsafe at various times. It’s part of life. It’s necessary, without that feeling we wouldn’t last very long as individuals, and as a species you could argue that being a bit more aware of our unsafety would be helpful as we crash around sowing the seeds of destruction everywhere we go. But it’s the ability to switch that feeling off that becomes challenged and, for me at least, eventually lost.
With intermittent feelings of not being safe you get some useful things – adrenaline for example – that can help you through whatever it is that is causing you to feel unsafe. You get fight or flight. But when that feeling becomes constant you no longer get that adrenaline rush to help. Instead a constant feeling of being not safe wears down your emotional immune system like one of those colds that never seems to go away. It leaves you exhausted and raw and (the thing I struggle to acknowledge) angry. Really angry.
A swirl of destructive emotions hovers over you, bumping into that sword of Damocles that a long term progressive condition with unpredictable outcomes pops over your head the day you are diagnosed. Suddenly the battle to keep going that by and large you take on daily without question becomes too much. The fear and effort, the resentment and anger, overwhelm your ability to get up, pick up your weapons, and enter the battlefield.
This week taught me something new. I’ve been fighting, as usual, and then something happened that pulled the ground out from under me. And I stopped. I stopped fighting. I stopped pretending. Lying there on the battlefield, exhausted, suddenly I was gifted a chance to become a witness and not a participant in the battle. And it truly is a gift, that moment. It forces you to notice all those things you have been too distracted to see, or too afraid to acknowledge.
It taught me that the symptoms I knew were flaring were not telling me ‘it’s okay you’re just a bit flare-y, carry on’ but telling me ‘stop and pay attention to me, you’re pushing your luck’. It reminded me that safety is just not there any more, and can’t be assumed anywhere, and that if you can’t live with that knowledge you will struggle endlessly. And it gave me time to put it in perspective. My feeling of being unsafe was legitimate and real, but also focussed my mind on two really important things – how much I need to take responsibility for managing those situations, and how much worse it could be.
Being unsafe as a disabled person in a Western society there is sometimes I think a temptation to assume that other people ‘get it’. But other people don’t – how could they? How could they know all the twists and turns of a disability like this, and what needs that creates? Unless we say. And there’s the paradox. By and large we don’t say, because we don’t want to say, because that means acknowledging what we are fighting so hard to ignore. Even if you could, spending your whole day saying ‘that’s not ok for me’, ‘could you change your plans for me’, would be too destructive to sense of self. You rely on others getting it, you rely on the adaptations being there anyway. I didn’t manage my sense of being unsafe this week well. I let a difficult situation become an unsafe one because I just couldn’t say no this is not ok for me. Writing this is the beginning of working out why and how to deal with that. The beginning of forgiving myself for not managing that well. And the beginning of acknowledging that I have been not attending to being disabled well recently and need to redirect some of my energies that way.
Perhaps it’s the Scot in me but I have found great comfort this week in thinking of my experiences of not being safe in a wider context. I often see news from war zones or disaster areas in the context of disability. I think of how utterly terrifying it would be to be like this, there. (Perhaps particularly as it was in such a place that I first developed the symptoms of what I would later be told was MS). My lack of safety is by and large emotional safety. My unsafe situations challenge principally my sense of self, my sense of coping, my sense of control. But to be disabled in a war zone or a disaster area, that I can barely imagine. We so rarely see them, the disabled, in those endless news items bring the suffering of others to our screens. Where are they? How are they coping? Is anyone helping them?
Luckily there are – and so I am using this moment of peace, lying here witnessing my struggles and acknowledging my failures to remind myself of how important it is to support them. If you are reading this because you’ve been here, then if you can maybe you could join me in helping the helpers a bit? Handicap International works to support disabled people in some of the toughest places on earth. What I like about them is that they both work to raise awareness and fight for rights and help on the ground practically. If you can spare a little cash that would be great, and if you can’t then sharing this link on your social media streams would be just as helpful!