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We need you to care

Easter approaching is these days a time of renewal and rethinking for me. Perhaps it would always have been anyway, I’m getting older, ruminating is one of the things age brings. But three years ago as Easter approached I began the decline that would bring me to the lowest moment physically I’ve ever been in my long journey with Multiple Sclerosis. I ignored all the signs and signals, I looked away as the car crash approached. Crash I did. But I had my wonderful MS nurse from Ninewells Hospital on my side and she got me through it. There were some scary moments. And some drug induced very nice ones too. But things haven’t been the same since.

Every day I ask myself – is this a good way to spend your life? Every day I look for the things that make the struggles worthwhile. Every day I don’t find them I worry. Every day I do I rejoice. But most of all, every day I work really really hard to get up and out and in the world. To work. Love. Laugh. Enjoy. It always feels somehow trite and cheap to say that what doesn’t kill you makes you stronger. And maybe it is those things. But it’s also true.

Growing up queer in small town 70s Scotland. Being isolated and excluded from ‘normal society’. Watching beautiful men all around you suffer and die in isolation as ‘normal society’ decided they couldn’t even have their partners in the room with them while it happened. Raging at the stupidity of a world that decided it was ok to tell you that your love was not equal, that your children were not your real children, that your family was not a real family. Watching night after night as the media and society repeatedly told you you are not equal. You are not one of us.

Then in 1994 I’m sitting in a hospital room and being told I have a progressive disease with no cure, a disease that might put you in a wheelchair, or render your helpless. Or might not. That might come and go, or come and come and come. That might bring pain and struggle that might be eased with drugs. Or might not. Drugs that might cause side effects worse than the thing they were meant to treat. Or might not. MS – the disease that makes the medical profession go *shrug*…

But just because it makes you stronger doesn’t mean it’s not hard. I still rage at the years I had to go through fighting to be seen as equal and I still struggle every day to cope with the effects of MS.

I am from a very long line of very tough women. The older I get the more I realise how much those largely Free Kirk Hebridean genes have shaped me. I am a Stoic whether I want to be or not. That has its good and its bad sides but as far as MS is concerned, its mostly good. It gets me up every day, it makes me fight through everything this stupid disease has thrown at me. But it also means like many disabled people I struggle to ask for help. I don’t want others to see me as weak or vulnerable or needy or ‘less’. And so as far as I possibly can, I don’t. Just like I can pass for straight, I can pass for ‘normal’… “The crutch? Oh just an old war wound you know!” (not far from the truth, I was I a war zone when it first flared up).

We seem to live in a time when the non-disabled have become hardened to the hardness of disability. Where the idea of levelling the playing field has become distorted into ‘spoiling’ us. Where somehow we are ‘getting away with it’ if we are helped to survive our days in a fashion a little closer to those without disability. Our hard won concessions are being chipped away at as if equality and inclusion are optional extras to be given or taken away at the whim of the non-disabled. It’s as if society cannot imagine a role for us other than ‘needy poor souls’ or ‘whining scroungers’.

I don’t want your hand. I don’t want your help. I don’t want your consideration. I don’t want your concessions. But I need them. We need them. We need you to care if we can get into that place safely and with dignity. We need you to care if we can read that important information. We need you to care if we can take part with everyone else. We need you to care if we can hear your announcements. We need you to help us make the most of what we have, be able to be the best that we can be. We need you to help us be able to be part of the world. To work, and get around, and be visible. To be part of your life.

We need you to do this because it is right. We need you to do this because it is just. We need you to do this because it is smart.

But you need to do this because one day it might be you.

From auteur to audience

I remember when we took our first born home and shut the door on the friends who had helped us get there. Standing alone in our two room flat, that funny little place that up till then had been ours and now was Ours, with that wriggling creature rendering everything different and new. The city streets we drove through, our street, the stairwell we walked up, the flat, all felt transformed. It was as if we had been away for years, like the man a friend had told me of who had come out of prison after a long sentence and was in shock at how much Scotland had changed; “Where are all the old bangers?” he had said in looking at the cars in the streets, “Is everyone rich now?”.

For us it was sudden shock and fear that overwhelmed us.  All I could do was stand there thinking, in the words of the late great Spike Milligan ‘What are we gonna do now?’ – little aware that I need not fear since that impossibly beautiful creature had but one mission, to teach us how to look after it. Those first few years were too busy with feeding and cleaning and tending and soothing and entertaining for much reflection, especially as number two came along almost exactly two years later. But the memory knows its job and squirrels away all of those experiences for later.

Those memories are constantly popping up now that my  impossibly beautiful creatures, my silver darlings, are Almost Men now. The Almost Years –  that equally terrifying time of transition and newness for a parent. This time rather than womb and world my boys hover between room and world, between life with us and life alongside us. Though this time my silver darlings have no inbuilt single minded mission to guide them and us. This time they are as adrift as us in understanding ‘what to do’. At least at the start.

In the early phase of that transition it seems we are all equally ill prepared. But then suddenly they start to show you the way again. Painfully slowly this time (an infant demands you get with the programme rather faster than a teenager, or perhaps you were just too tired to resist back then) you begin to learn that your job is not to wait hand and foot as in those early days, but to stand aside and support and care from further away.

You have to learn that the overwhelming need to care and protect for your infant must be replaced with something else. Which of course is incredibly difficult as you have just spent the best part of 15 years getting really good at that. Now you have to learn to stop seeing yourself as the auteur of this production, working in the rehearsal room with the performers. The performers are stepping on to the stage now and you are no longer needed as auteur. The cast have rejected the auteur and seek to be self determining. What they need now is a stage, and an audience.

You have to step out from behind the stage and find yourself a seat in the audience. Which is not to say you have no role – as every opera lover knows the audience can encourage or discourage the performers, can maintain the right atmosphere or ruin it. And of course we are no ‘ordinary’ audience members. We know this performer rather more intimately than most, we care about them rather more deeply than most. But transition we must.

Being the auteur was a safe and familiar role – albeit terrifying and sometimes painful. If they fall from the slide, it’s my fault. If they come off the bike, it’s my fault. If they are sad, it’s my fault. The constant dread of what might go wrong and the constant preparation to berate oneself are as much a part of early parenting as late nights and unidentifiable semi-solids in unexpected places.

Transitioning now to the audience feels deeply uncertain. The requirements of the role have to be learnt, and this time the outcomes are more in their hands than mine. Our first attempts to take our new positions, they on stage me in the stalls, are faltering and stiff and riddled with mistakes. But slowly night after night we get a little better.

I begin to see my Almost Men find their voice and slowly I am learning how to aid and not impede the performance. Slowly I am learning to let the memories of who we were together fall away enough to allow the performance of who we will be emerge. Though one thing has not changed. I still find myself wondering ‘What are we gonna do now?’.

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