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…