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A Young Woman’s Fear, A Young Man’s Despair

me shaved headWhen you are female, 23 years old and nearly six feet tall, standing on Princes Street in Edinburgh in 1988, with a newly shaven head and clothing selected to clearly identify you with the lesbian tribe you have so enthusiastically found, you learn a lot about anger and its roots.

There we were loudly protesting against the State’s latest assault on us as equal members of society, legislation being proposed (later passed) to prevent the “promotion” of homosexuality in schools. We were a small group on that first protest, it was the 80s and gay liberation was still a tenuous concept in Scotland. And there they were: the women with alarmed faces hustling children by, the men with snarling aggression looking for an opportunity to pounce but frustrated by the public setting, the good Burghers with a mixture of disgust and pity in their eyes for the brief seconds they caught yours. Clinging to our signs and to each other, we found community and identity in those times, the anger we absorbed pulling us ever closer together. It didn’t make the difficult conversations with family, or the moments of terror as you realised the jeering voices behind you were getting closer in the late night walk home from the clubland you had minutes earlier been happily forging your sense of self in, any easier. But it provided some respite, some space to grow a bit stronger, to learn some new tricks.

Fast forward a few months. It’s late one night, you and two friends are in the gay café (this was before the acronyms became more inclusive of the rainbow’s diversity) you have recently set up. We were closing up after another eventful evening. Yet again a gang of young local men had gathered outside to harass the customers as they came in. Usually you pulled down the shutters and waited till they tired, a lock-in without the party. This night was a little different though. Perhaps it was the cumulative effective of bricks through the window and the indifference of the authorities to the frequency of these gangs on the door step over the previous few weeks – but this night you and one of your friends decided enough was enough, and faced them, angry and tired of it all. In the heat of that exchange your friend randomly pointed at one of them and suggested that he was gay himself: an attempt to turn their contempt and hatred on themselves. Random and totally false… or so we thought. But here he was, soft now, all that earlier aggression displaced by drugs and despair. You know right away there is no danger here, and that there is a story to be told. Through slurred words and mind, he manages to tell us of his friend, of the man he loved. Of his life and the impossibility of being gay in his world. Of his wish that he could live another way, be someone else. And of his grief, since his friend, his love, had died beside him of a glue overdose. We listened and sympathised and then he left. We never saw him again. I have no idea what happened to him. But I learnt something about hatred that day. I learnt that besides fear, and hatred of self, sometimes it’s just overwhelming sadness that has no outlet that stirs it up.

Shame and the grief that often comes with it, the result of the kind of identity inequality that comes when we deny others the chance to live their authentic selves, these are the roots of hatred and anger every bit as much lack of education, or of financial inequality, or direct assault. We stoke shame, promote inauthenticity, at our peril. The world has changed a lot since I listened to that sad young man’s story. But authenticity is still hard to achieve. Our public narrative may be of equality, but words cannot save us from shame. It needs concrete actions. I’ve been reflecting on this a lot the last week as I watch just such concrete actions in my workplace, praise worthy of course, but I can’t help wondering if beyond my workaday world, in those pockets of deprivation and despair that still exist all over the world, things really have changed.

Would it be different for that young man now? I feel a little ashamed myself that in the busyness and challenges of my own life (especially those related to my latest identity, as a disabled person) I have forgotten to wonder about that, and I have resolved to find out. To not let myself forget how important it is to protect and nurture the advances we have made, and to be sure that those advances are spread equally through society.

She had no idea what would become of her, that girl on Princes Street. She’d have been pleased I know that she managed to live up to the Huron native American saying she’d picked along the way – “You’d better live an interesting life or else you will become a boring old woman with no good stories around the campfire.” But she would be ashamed too I know, to think that she lost sight of that young man and his despair.

The Dying of the Light

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.

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