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A New Day

Was it just last night? We three, sat there, safe in each other’s open and curious minds?

Ideas and laughter were flowing, eyes sparkling as we bounced around ideas for fun direct actions to tackle the daily experiences of discrimination we had experienced as disabled people trying to manage in a world that still does its very best to put the disabled in disabled people. We felt angry, excited, amused and energised.

‘I know this feeling, I remember this.’

All those years ago sitting in cafes and bars planning marches, events, actions to tackle LGBTI discrimination. My body tingles with a visceral memory of those days, those hard, exciting, scary times. The mid 80s in Scotland were not a comfortable or even a safe place to be a young lesbian. We lived with fear and violence and discrimination every day. We were angry, but we were also joyous. Why is it so hard to feel like that now? Is it because I am older?

‘Don’t be stupid. You know why. You know why this hurts so much…’

We looked at each other and understood how important this was, to talk like this. To let out the anger and fear was good. But there was something else… We were letting out the hurt. The hurt at how unjust the world’s apparent inability to notice all this was. All the able bodied people who seem incapable of really taking on board what it is to haul ourselves through a world with endless barriers. How it feels navigating a journey full of obstacles only to find yet more as you try to get into your place of work. How it felt to piss yourself on a train for want of a disabled access toilet. How it felt to be stared at with anger and disgust and fear intermingling. But there was something else. Deeper. Darker. More shameful.

‘Come on Cat, say it. Name it. You know what it is. You can trust these women. They can hear this.’

She asked the question I knew the answer to but felt so afraid to say. I said it. Safe here with these amazing women.
“It’s because it’s not joyous. When I was a kid fighting for gay rights I was fighting for love, for joy. Fighting to be allowed to do the thing that made me happiest. But now I am ‘fighting’ for the right to be marginally less unhappy. Fighting for something I wish with all my being I wasn’t. Fighting to be treated equally as kind of person I wish I wasn’t. Ashamed that I have to ask for these things. Terrified of why I have to ask for these things.”

I saw it flash across her eyes – the recognition. My heart sighed contentedly and I instantly felt less pained, less ashamed, less distressed. In that moment I knew everything had changed, would change. My struggle to be a disabled rights campaigner was about to shift gear. I was home.

Today is a new day. Today is a joyous day.

 

 

 

 

Living in an Age of Uncertainty: Lessons in Swimming in Stormy Weather

I see it everywhere – recognise it. The challenge of living with uncertainty. For almost everyone I know the last year has left them feeling like the jigsaw pieces have been thrown up in the air, and they have no idea how they will land. I recognise it because it’s how I live everyday, and have done for years. Never knowing what my multiple sclerosis (MS) will bring that day, that week, that month. Never able to pretend that the future is fairly predictable, that my current cognitive and physical abilities will largely persist. Never lulled by the chimera of a life set to unfold along a fairly set path.

For reasons that I hope will become obvious I offer here some of my lessons on living in an age of uncertainty,  not as ‘tips’ or ‘tools’ but as reflections, told to myself, for my own aid alone. If they happen to interest or resonate with you, well that’s icing on the cake!

Lesson One – Name Your Territory

We all at some level accept that change and uncertainty are part of life. However the massive amounts of effort humanity puts in to avoiding those things betrays our discomfort, our fear. From building cultures to building walls, from organising ourselves to amusing ourselves to death, we have become ninja warriors of denial of the simple truth of life; that all, as the late Zygmut Bauman so beautifully suggested, is liquid. We truly do live our lives swimming in stormy weather, whether we recognise it or not. I see so many friends looking around for others to help, or guide, or accompany them as they learn to swim in these newly stormy seas and can’t help but feel a sense of dejá vu.

“OK. So I haven’t drunk anything. I don’t think I’m sick. I’m pretty sure the world is not rocking on its axis, and this wall doesn’t seem to be moving either. So what the hell…” I’d walked that wall near where I was staying many times. Not at night admittedly, and I had noticed that my usual sure-footedness seemed a bit less reliable than usual recently. But I’d put that down to the stress of the situation I was in. So why the hell couldn’t I do it tonight?

I’d learn why a year and a later. Meantime I just tried to right myself as best I could, and carry on as if nothing had changed. Was changing. It got me through the night, got me back to base. But as a strategy it was to cause me a whole heap of problems in the years to come. The levels of change and uncertainty I would soon learn were to be my lifetime’s companions I could never have anticipated back then on that wall. Still less standing in the rain outside a hospital a year and a half later, trying to understand what I just been told and finding myself woefully unready to be a person living with multiple sclerosis.

MS has taught me that when the pieces are permanently up in the air, step one is make it your uncertain world. I named my world the sea, my experience swimming in stormy weather. Almost immediately it felt less strange – after all walking with ease on land was now a distant memory.

Lesson Two – Make Your Own Lifebelt

I suspect the greatest gift MS has delivered is that doing this, writing to myself, is my lifebelt.

Like most travellers in a new land I felt impelled to look for guide books and lifebelts around me, and boy are there plenty of those. From online advice sites replete with everything from the bleedin’ obvious to quackery of the highest order and from the mountains of self-help and self-improvement books that overwhelm our railway and airport bookshops, I started to drown as I swam alone in a sea of abstract thinking and other people’s words. I lost sight of the only concrete thing I have, the only solid thing I have, to accompany me on this journey called life: my own thoughts about my own experiences filtered through my own history.

It was to take many years but eventually I understood that ‘the answer’ could not be found ‘out there’. Eventually I would connect the skills of observation and inquiry that my professional life as an ethnographer had gifted me with my love of writing and craft a lifebelt that fitted me perfectly. I learnt to sift out the noise, and in the stillness I learnt to do the most importat thing I could do for myself. I learnt to find my own words.

Being diagnosed with MS brings with it a language crafted my medical professionals, for medical professionals. A shorthand, as all professional languages are, that allows them to communicate amongst themselves. But without the years of education and the experience of daily use they had, as a patient suddenly I had to acquire these words. Words other people invented for what I was feeling, for what my body was doing to me. It’s not surprising it left me confused and afraid.

But there was more. I had to try to grapple with the languages of science and pseudo-science that accompany the tidal wave of therapy, support, self-help and improvement most of us will be quickly overwhelmed by whether we seek it or not. Is this depression or anxiety, or both? Am I sad, or is this grief? I went to therapists and found myself spending as long trying to learn ‘the right words’ (i.e. their words) for my feelings and experiences as I did trying to simply feel or live them. I quickly lost sight of the shores of my own understanding. It was lesson three that would guide me back.

Lesson Three – Keep Your Old Guides Close

Is it because it’s a new challenge we often feel so compelled to look for new guidebooks? Or are we just flighty creatures: blackbirds drawn to the latest shiny thing in the environment? Engulfed in other’s understandings and languages it’s easy to forget that we have our own experiences and history to help us with these changes..

MS doesn’t like to be overshadowed. It notices when I forget it, when the world around me has my attention. Ever the attention seeking narcissist, it’s decided to rear up and give me a shake. ‘Hey, look at me, I can make your arms and hands messed up too. Bet you didn’t see that one coming! Oh I’m sorry, have I made you scared again? Am I making life harder again? am I changing things for you again? Well good. You think you have this. Pah! Puny self-deluded human!”. The pattern, my pattern, kicks in. Deny. Accept. Retreat from others. Put my game face on. Freak out quietly behind it. Become tense and angry. Creep over to the water’s edge. Dip my toe in. Pull it out. Put it back. Run away, find a hideaway, curl up in a corner and cry.

I curl up and cry, until I remind myself that noticing the pattern is one of my old guides. Until I remind myself to look for the rest of my old guides. Literature, music, an opera house, laughter, my garden, and this blog. These are my guidebooks. These I know from many years experience are what will guide me back in sight of shore. I keep them on the shelves by my bed, in my devices, my bag, and in my head and heart at all times. I go back to them over and over, in good times and bad. With these there is no need to over think, or translate unfamiliar language or concepts, or consult the glossary. I pull them out and put them to work. As I feel myself drown they hold my head above the waves long enough to get swimming again.

Lesson Four – Make Yourself at Home

I will never ‘master’ living with MS, let alone the rest of life. I will never ‘Get it Done’ or perfect my ‘Life Hacks”. Despite the world’s endless enjoinders to ‘be the best you can be’, to constantly improve, to get it right, I am destined to swim badly in stormy weather always and I am (at last) fine with that. No, not just fine. I am embrace it, I celebrate it.

Just as walking is falling then catching yourself (well if you walk normally at any rate, something I no longer do!) my life seems endless round of sinking and bobbing up for air. Of drowning/not drowning. Both have their positives. Sinking brings a sense of suspension in time and space that offers an opportunity to feel and see and think more intensely. Bobbing up brings a sense of rebirth, a chance to see and feel and think anew. I celebrate my poor swimming, it gifts me new ways of thinking about my life. I will never learn to be strong swimmer here, never escape back to dry land, but I am very, very good at drowning/not drowning. I rejoice in that.

Both sinking and bobbing up strip away the noise and complexity and distractions of the everyday and allow us to simplify. When the waters are at their stormiest I make lists of simple things to achieve each day. Tiny lists at first. But they soon grow, I soon grow. I celebrate my tiny achievements – those tiny, inadequate, glimmers of hope. The world’s noisy insistence that I be ambitious, that I achieve, succeed, becomes driftwood. I see them floating in the distance as I drown/not drown. But I have no time to attend to them any more. I am here in these stormy seas to persist as long as I can, to battle up for air as often as I can. Anything else depends on so many other things beyond my control that to be seduced by the sirens of success, or riches, or ego, seems ridiculous. I happily leave that for the dry landers.

These stormy seas define me and my time here on this planet. I have room to splash about, but no more. This is not the dry land I imagined my life living out on, was told it would play out on. I was not prepared for these stormy seas. The jigsaw pieces were thrown in the air that night on the wall. The picture of a landscape became a seascape. I fell in, and I learnt to swim in stormy weather. This may be an age of uncertainty for many of us, but handily enough we humans are incredibly adaptable. We may never get back to dry land, but we’ll make something of these stormy seas. We will make ourselves a home here. It’s what we do.

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