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A Bit Less Shite Every Day

India - walking men

Most of the time you don’t think about it. And then you need to move. And then you do.

It’s been a funny week for this whole being disabled business. You’d think at 20 years in to having MS and being well…quite frankly, no spring chicken, it would be getting better. I loved the It Gets Better campaign a while back to help young people coming to terms with their sexuality cope with the pain that too many still experience too often (Are we not over that yet straight world? Bloody hell this is taking a while…). But sadly there is no It Gets Better with MS. It might be part of our PR problem, that our catch phrase is “It Gets Worse”. ..

When I was first diagnosed I was most afraid of pain and loss of physical function. A bit later I worried a lot about loss of cognitive abilities. But actually what turned out to be the hardest thing of all was loss of sense of self. That person in my head, the one I was and was going to become got snatched away way too young, though irritatingly I still have her in my dreams, just to remind me of what was not to be. Now when I move, I have to turn all my energies to making sure everything is going where it ought to be going (not knowing where parts of you are in space being a feature of MS I would very much like to have not encountered). Now when I move I cannot be casually confident that moving ‘that’ ‘there’ will be accomplished without pain, or accident, or embarrassment.

So the chatter at work of walking meetings and standing desks and such like, while all of course good and right in this Sedentary Era, pushes all sorts of fear and inadequacy buttons. There is no question anyone is suggesting anything compulsory, and of course adaptations to the idea can be made, but when walking and talking at the same time are most likely to lead trips and falls, when thinking about work whilst doing the massive amount of extra processing required to walk without said trips and falls would be tricky, the prospect of such things is enough to send my ego on a bit of bumpy downward spiral.

I do hate that I cannot walk well, painlessly, with ease. I worked so hard for years to not say that, but it was futile, because I do. Not in why me sense, I am content with the notion of a simple twist of fate for that one. But in a ranting at the TV, pissed off, ready to chuck something out the window kind of a way I hate that I need a crutch or a stick. I hate that I have to choose between energy for this and energy for that when I should be able to easily accomplish both this and that. And I hate that I still feel ashamed, embarrassed, awkward, less… I hate that I feel dis-abled. I hate I am dis-abled. I hate how much I scan the world for signs of my difference, and wonder if I will ever really feel at peace with this, really be able to accept that this is me. Because really what I hate is how shite I am at being this.

I want to be one of them – one of those for whom such things do not require much more thought than “that would be good for us”. I want to be the me that bounded happily up and down the hilly streets of Edinburgh, that whizzed around York Place on her bike thrilled to see if she could make that narrow space. I want to be one of the people that try and avoid walking with me, or fuss to pass me in the street quickly, because they know they will be slowed (most of course are the antithesis of that but you’d be astonished by how many people do fit that category). I hate that I need the kindness of strangers and friends.

But of course I am human, and therefore contrary. The world is different when you are slow, and slowed, and stopped. You see things you would otherwise miss. Like when I was a kid and was obsessed with climbing around on roofs, constantly amazed I was not caught until I realised that “people don’t look up”. People rarely slow enough to really be in the worlds they move through. It’s one of the things I think I loved most about learning to become an ethnographer – that sense of slowing, engaging, being in the world but differently, is familiar, known. When I am being an ethnographer my disability really matters very little, and I find a kind of release from the constant self-criticism. And, ironically, it’s in this job more than any other that I have come to understand how valuable that ability is, and how dangerous it can be when we don’t do it.

I appreciate that I can look differently from time to time, consciously seek to experience and know the world differently from time to time. Because when you take the time to know, and to challenge your knowing, you discover something really quite incredible. That in amongst the busyness and stress and doingness and stuff of modern life, we are still almost to a last one just tiny fragile fucked up little things trying really hard to be a bit less shite every day. We put on masks and costumes and create stages and scripts to cover all that up. But really, underneath it all, if you slow long enough often enough, you’ll see behind the stage. Just like Goffman said, you’ll see that all that social constructing of reality is just how we cope with our stage fright, how we hold the scary monsters under the bed of self doubt at bay.

So though when I am on that stage I often feel less, vulnerable, afraid, ironically it’s stepping off the stage for a bit, reconnecting with my tiny, fragile, fucked up self, that more than anything reminds me that all we have to do is try to be a bit less shite every day. This week I felt a bit shite about disabled me, but today I feel just a little bit less shite.

We need to talk

foggy day

I think about dying, a lot.

There, it’s said. The thing we are not supposed to say. The thing we are supposed to avoid, duck, look away from.

When you having something like MS lots of the people around you (family, friends, medics) have a vested interest in believing that you don’t think about death and dying; that you can and will cope with the fears and deprivations and pain of it without thinking of dying. None of us wants to think that the people we care for are thinking of dying. None of us wants to think of it ourselves. So we push it away until the very last avoidable moment and sometimes, tragically, beyond. Especially in modern western cultures where doing anything about the manner and timing of one’s death is taboo.

Cast your mind back to childhood. How many of us played games that involved us rehearsing the moment of our death, or fantasised about how sad our parents were be if we died and they couldn’t say sorry for all the dreadful things (making us eat our greens, do homework, go for *shudder* walks with them) they made us do? I first realised I might be “different” the day 10 year old me woke up after dreaming that I was the security guard who had saved Princess Anne* from a kidnap attempt, and that I had expired nobly in her arms as she wept for me (I know, an unlikely object of affection but there you go, the 10 year old heart wants what the 10 year old heart wants). How many of childhood’s games and stories are in fact tools for thinking about, rehearsing, dying and death? Why do we put this all aside with other childhood things as we grow up? Is there not value in being able to have dying and death as topics, sometimes serious and sometimes playful, of daily life?

By making it taboo, by putting it away with the toys, memories and storybooks of childhood, we make it so hard to think about when we need to. So difficult to share with those who could best help us work through our feelings and fears. And we make it so serious. We rack up the seriousness stakes so high that when we do find our mind turning that way it seems such a significant, lonely, “terminal” moment. But need it be? Could it not just be “a thing” – a thing we have to think about and plan for now and again so that we can carry on, like we need to think about our career, or our relationships? How odd the interwebz are awash with talk of life, love, career management and so devoid of death management, so replete with life hacks and so empty of death hacks…

I am scared of what my disease might do to me. I don’t want to die needing tubes and other people to do what I expect to do by myself. I am afraid I will not be able to cope with that loss of control, that dependency, and terrified of having no choice in that matter. I want that choice freely available to me. Not because I want to die, but paradoxically because I want to live, to live free of that fear. I want it to not matter that I don’t know if I will be able to cope come the time because I will have options if I cannot.

Every now and again my throat spasms are so intense that I cannot breathe. Or rather cannot breathe through my mouth. Breathing through my nose is not affected, and I just need someone to remind me of that, to remind me that I have another option I can take. Every now and again I feel so afraid of the future that awaits me that it can be a struggle to not want it to end there and then. But no one can reassure me that I will be ok, that there will be an alternative option when I need it. No one can laugh with me about how silly I was to have forgotten my options. I can’t think on those moments after the fact and reassure myself that the next time, all I have to do is remember my options. For I have none, currently, that do not require the very thing those feeling afraid and insecure least need – secrecy. I have no options that feel open, and positive, and reassuring. I want to live safe in the knowledge that I have an option should the time come. I want that comfort because far from hastening that moment, it will delay it. I want to be able to talk about this so that I know that when the dark nights come, the fears mount up, those around me know how I feel, what I want, and can reassure me that I can still breathe, I do still have options, remind me that when the time comes it will be ok, I will have choice.

It’s time we grew up and went back to the days of childhood when talking about death and dying was just part of being a kid, part of play. It’s time we remembered that everyday in this country people are dying denied of the right to a death that minimises their suffering and meets their needs for a good death. It’s time we remembered that that are no second chances. It’s time to talk about death. Because for too many people, not talking about it is the very thing that is hastening it.

I think about death a lot. But I don’t talk about it enough.

Postscript: and there it is, the relief and the lightness and the reassurance that comes with “talking” about it. I may not (yet) be free to control the manner and timing of my death but I can take control of the talking about it. A step in the right – life affirming – direction! 

 * Re. that dream. In my “defence” this was the era of the Blue Peter/Valerie Singleton appearances…

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