lightOn the eve of a much anticipated partial solar eclipse in the UK the question of light is much in my mind. As Dylan Thomas said:

Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.

For many years I have thought of my MS as “getting old faster”. Somehow in that banal little idea there was a germ of comfort – that my experiences were no different from most people’s; albeit they were happening sooner than might have been expected. But I had reckoned without time not so much changing me as catching up with, and then pushing brusquely past, me. For whilst MS is in many ways just like getting older faster, it takes this “old young(ish) person” into territory no “actually old person” has experienced. I am an 80 year old who instead of being in her dotage, retired largely from the cut and thrust of career, family, mid-life dreams, is still embroiled in it, still prey to the desire to do and achieve and explore. Instead of remembering what has past, of mourning the loss of the time of intense being and doing in the world, I am raging against the mismatch between my desires and capacities, between my plans and my time, between my needs and my energies.

As the reluctant host of a progressive disease I am at the point where the gap between what I want to do and achieve and what I can is much wider than is comfortable. Of course there has been a gap for many years in fact, slowly widening. But  I was able to ignore, endure, muddle on. And now? Well now the gap has become too insistent, too wide. The denial and small adjustments that got me this far no longer work. And suddenly time is running out. I no longer look ahead and see decades of working life, but years.  Where once I would have looked ahead to 15, maybe 20 years, now there are… 5? 10? 2? Each year, each month, each flare up, eats away more and more, begs the question more and more ‘Is it time to stop?’. The effort to get up, to get through the day becomes harder and harder. But the desire… that simply seems to intensify.

I feel time running out so fast.  I have had a sword of Damocles hanging over my head for so long, have been fixated on it for so long, that I forgot to pay attention to what was beneath my feet. To notice that the road was running out. Now that the course of my disease is secondary progressive, the threat of the sudden catastrophic relapse has been usurped by the steady eating away of resources and energies. And with this comes an impatience and an urgency that is unbalancing me. I don’t know how to prioritise, what is important. I don’t trust my judgement, I feel almost paralysed by choice. Should I do this, go there, invest in that, or them? But what about that, them, there? I had hoped when this time came there would be some maturity, some calmness, some level of acceptance that would guide and settle me. But unfortunately that has not materialised.

So instead I find myself bouncing between enthusiastically gulping at life and fearfully contemplating it. And I feel such a huge sadness, not at the idea of death itself, but at the idea of the end of future, of plans, of schemes and adventures. And suddenly the words of Dylan Thomas seem here and now, not forecasts of a future eons away.

Where once I read raging as anger, now I see it as energy, as passion, as urgency. I don’t want to waste a second of this time. I don’t want to wake up in 2 or 5 or (maybe, hopefully, wishfully) 10 years time and wish – wish I had spoken up instead of stayed silent, wish I had pushed at the doors instead of walked by them, wish I had seized the day instead of settled. It isn’t ok, it isn’t ‘fair’ (albeit the question ‘why me?’ has never felt reasonable, since ‘why not me?’ seems just as acceptable). But it’s what is happening, and it comes bearing gifts. I know I will never again (as I have in the past) endure for years a situation that is unproductive, or unkind, or damaging. I will never again betray myself or my values for the sake of a quiet life. I will never again let opportunity or challenge slip through my fingers through indifference or laziness or fear.

I don’t make every second count. You can’t when you are devoting a huge amount of energy to making your legs move the way you need them too without falling, or holding your nerve when your throat decides to stop working properly. But I will make my acts count, I will seize what I can, I will enjoy what I can, I will challenge myself when I can.  And I will rage against the dying of the light. I do.