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Between hell and hypothermia

  Footsteps in the snow, nothing very remarkable in the grand scheme of things I suppose. At least for most people.
Over 2 km up the snow on an Alpine Mountain top is as perfect a thing as one could ever see. We were lucky. Karwendel in the Bavarian Alps is not one of the popular tourist resorts, despite its proximity to Munich. The only skiing is off piste, the cable car up here full of dire warnings that this mountain is suitable only for experienced skiers willing to take the risks associated with attempting the uncleared run. In fact it was so quiet in the cable car station that at first we wondered if the mountain was closed. But luckily soon enough a small group of us made our way up to the dramatic James Bond style mountain station.

Like most people I was here for the air and the snow and the views. For the chance to stand here, high above everyday life, and feel being at its most dramatically elemental. But I was here for another reason to, something I am sure quite alien to most. I was here for the cold, I was chasing that fine line between hell and hypothermia.

I miss walking with ease. With every year that goes by in the company of Multiple Sclerosis my memories of those times grow stronger and stronger. How it felt to bound up stairs 2 or 3 at a time. How it felt to chase along a London street after a bus pulling away from the stop for the particular joy of getting there just in time to leap on to the back step. But my walking sticks and crutches are part of me now, so much so that I find myself irritated by people who move them or touch them. Someone once, curiously enquiring into life with crutches, asked me if I had name for mine. The question completely took me aback. It was as if somebody had asked me “do you have a special name for your legs?” But for all that, I still ache to be free of them. I still dream of walking with ease, without pain. I long for a life without that special feeling of insecurity that I sometimes get if I lose sight of my crutch. 

I discovered it in Sweden about 15 years ago, out in a Swedish winter a bit north of Stockholm. I was just beginning to find my walking affected noticeably by MS. My left leg was beginning to drag and whilst walking was still pain free, I could no longer run and my balance was becoming an issue. So when that day, not really dressed for the occasion, I became very cold my discomfort and concern about developing hypothermia prevented me from noticing the limp had gone. That I was walking almost normally. Until suddenly I was running, something that would have been completely inconceivable moments before. It was like that moment in a dream when you realise you can fly. My heart was racing, I had no idea what was happening but I knew I never wanted it to stop. Of course it would. Back in the warm as my core body temperature is my normal gait reappeared.

It’s happened a few times since. Once in Edinburgh when I hadn’t realised that my shoes were letting in the ice cold slush typical of a Scottish midwinter until, as before, I suddenly realised that my walking was improving. Another time in a particularly cold Berlin winter. Reading up I discovered that it was a phenomenon known to medical science of course. Just as Multiple Sclerosis is likely to flare up as the temperature rises it can be improved by a quite marked drop in core body temperature. Though the literature talked of keeping cool as a way of minimising symptoms worsening during periods of hot weather, the idea of reclaiming one’s ability to walk normally by becoming extremely cold was less discussed. For by then I had realised that for this to really work you had to get pretty close to dangerously cold. 

For obvious reasons it’s not something I would recommend or indeed try to do on a regular basis. But every now and again I need that feeling, I need to reclaim the person I would have been had I not sat in that consultant’s surgery all those years before. Coming to Munich this year I had such an intense desire to find that place once again, that beautiful place between hell and hypothermia, I felt obsessed with idea of getting to the Alps. 

Up on that mountain, the temperature well below freezing, the combination of snow underfoot and a sharp wind quickly worked their magic. Karwendel has been beautifully designed to make it possible for even people with very limited mobility to get to the kind of panorama point that fills one with an addictive lay intense joy in being. A well cleared, short pathway, with benches and stopping points every few metres, meant it was fairly easy to get to a dramatic viewing point where despite its proximity to the station one could feel alone with nature at its most powerfully life enhancing. 

As I recovered on one of the generously numerous benches, surrounded by the kind of views that explain so much of Heine and Wagner and Nietzsche, I slipped off my hat and gloves and loosed my jacket. The closeness to the station and the presence of my companion gave me the comfort I needed to push myself a bit closer to hypothermia than most would care to try. It didn’t take long before I realised that my balance was improved. The slight tipping sensation that normally accompanies me was gone. I stood and more in fear of what might not happen than what might, took a step (albeit still with crutch), and then another. 

Despite the wind and the snow and uneven ground the steps were secure and effortless. The highest safe viewpoint given the deep snow and the high wind was a few steps away. Under normal circumstances trying to get there would have been both difficult and terrifying. But with balance restored I set out. It’s hard to explain what being able to move one’s legs without enormous physical and mental effort, and without pain, feels like. Perhaps the closest feeling is when you open a Christmas package as a child and find exactly what you asked for is unexpectedly in your hands. On that exposed ridge I was not quite ready to throw off the crutch and walk, though I was ready to stand there without it, demanding my companion take photos to prove my achievement. So small for most, so powerfully important for me.

Feeling suddenly, almost frighteningly, powerful I set off on the short walk back to the station. I knew enough about my emotions to be careful and delay doing what I was by now desperate to do. Confident as I was, all powerful as I was feeling, I had enough self control to hold on a bit. On a stretch where the ground was even, the snow well compacted, and where we were protected from the wind, I lifted my crutch and began to walk without it. Not quite the free flowing run of all those years ago in Sweden, but securely enough, smoothly enough, to satisfy my hunger for that other me, the one that could have been if not for that day in the consultant’s room. And there they were, those few steps in the snow on the mountain top. Alone. No crutch marks beside them. Testifying to that other me, that might have been me.

It’s easy to over dramatise, dangerous even. Chasing near hypothermia for a few fleeting moments is not something one can do often. And as with all highs, there is the inevitable coming down after to deal with. But I was ready this time. I knew what would come. Previously when this has happened I struggled to ‘reacclimatise’ to my normality, to my exhausting, painful and ungainly walk. This time I knew that there was a price for my little slice of heaven. 

Perhaps it helped that it was in a place so close to heaven, so out of the ordinary. Instead of the sadness that accompanied previous experiences of coming down, as my ‘normal’ sensations and capacities returned this time I felt a kind of quiet and comfortingly safe grief. Perhaps in a way the aftermath is as much what is powerful about this odd experience as those brief moments of free walking. Up on the mountain I felt such intensely joyful being, a revisiting of another me, a me who had never had to endure what MS forces us to endure.But  back down in the everyday I could let myself see and feel the sadness that mostly I push away so that I might get on with life as best I can. I could embrace a small, warm, comforting feeling of sadness for myself. And then let it go. 

I worry each time I ‘try’ to find that place between hell and hypothermia where the me that might have been still exists that she might be gone even from there, or that the return will prove too devastating. But perhaps by associating it with a place of such unusual beauty, a place so uncommon, I have inadvertently found a way to chase my might have been self in a way that allows for heaven and hell to be gently experienced. For the positive and negative of life with MS to be balanced. As Yeats so beautifully wrote in An Irish Airman Forsees His Death: 

A lonely impulse of delight

Drove to this tumult in the clouds;

I balanced all, brought all to mind,

My lonely impulse urges me on a rather different journey to Yeats’ airman, but nevertheless provides the space and time to balance all, to bring all to mind. 

Karwendel I think we shall see each other again many times in years to come. That journey now feels a pilgrimage for me, and a reason to hold tight to the words of my consultant the day he diagnosed me. At the time they felt perhaps a little insensitive but they have served me well all these years “Keep a stiff upper lip and don’t sit down.” For as long as I can haul myself along that mountain station path, I’ll visit you, the me that might have been. And then I’ll come back down and make peace again with the me that is. Between hell and hypothermia there is a little slice heaven after all. 

Being. With. Now.


So it was true. It does pass in a flash: your childhood, your youth, your children’s childhood. One minute it’s 4am at Leith Docks and you and your friend are hanging out watching the sun come up, stretching out the last bottle of beer, singing songs and dodging drunks. Your jeans are torn and your hair shaved and your fingers stained by the cheap rollup tobacco you smoke, wilfully ignorant of how much you will regret that. Then suddenly you are in the same place 30 years later, only now the only thing that has you awake at 4am is insomnia, and this is the place you work and not the place you wander, wonder, love, dream. Now it’s a place you pass through, not really attending to the traces of all those paths taken and untaken. Mostly.

You didn’t know it then, but you were to be lucky, you stumbled through life picking up enough weird experiences to learn a few life-saving tricks. You’ve learnt how to be here, now. Not all the time. Not always when you wish you could. But often enough that life’s challenges and disappointments and grief can be nursed more gently than might have otherwise been the case. You learnt how to switch off the chatter in your head “What do I do now, what’s in this for me, what do they think of me, what happens if I…?”. The endless narcissistic angst that litters our minds, like the detritus defacing city centre streets in the early hours of a Sunday morning. You learnt how to still the memories that seem to shout so loudly so frequently now. You learnt how to turn up the intensity on seeing, hearing, feeling. A series of near death moments (weirdly one every decade, a pattern you hope stops this decade), a professional turn, a love, all helped you hold and practice this skill.

Was it always there, that knack? You remember that time in Loch Awe, on the little island your family holidayed on so often? You roamed all day like a character plucked from Swallows and Amazons. Climbing trees, exploring overgrown gardens from the time when this island was home to a wealthy man’s Gothic baronial fantasies. Adventures were everywhere on this little island, parents calmly unconcerned as you were alone there those precious weeks. You’d explore and craft and swim and forage until exhausted you would collapse on the ground by the crumbling wooden jetty. Lying there on the grass, staring at the sky and listen to the water and the trees and life above, around, and beneath, you sometimes found yourself crying from the being-ness of it. You felt, without words to express it, that this being-ness only really came when the sense of connectedness came. As you lay there overcome by feelings of togetherness with the land and the sky and the water and everything around you, you knew that to be with was to be now.

A few years later, freshly out in the world, you’d feel the same sensation as you watched an old couple struggle against the fierce Edinburgh winter rain. Bent into the wind, legs dragging as if through mud, you suddenly felt so with them, so in their moment, that your heart filled with an unexpected love for them. It came easily in youth, that sudden sense of being-ness and connectedness. In adult years the frequency dropped as life and money and worries and career and all the things that hide the simple being-ness of life buffeted you like that fierce Edinburgh wind. I thought of all this today as I sat on my uncle’s chair. A simple wooden chair he used in his study. A couple of hundred years old, its surfaces rich with layer upon layer of wax and care, its arms rounded from the thousands of hands that have run along them. Without thinking about it, I knew it was a time to switch it back on. Feeling frustrated with myself and life, my past and future living selves noisily tussling in my head, I switched it on without even noticing.

How grateful I am for all the adventures and (far more numerous) misadventures that led me here. If I had not had those reasons to hold and practice that youthful skill would it have died? I shudder to think of that, since I have come to understand that those moments are what protect us from the damage that living in the past or in the future inflict upon us. Living in the past it’s hard to avoid guilt, shame, envy, bitterness. Living in the future breeds anxiety, meanness, fear. But to be here now is to be with, and to be with is to be at peace, to be open, to be free. It provides respite from our past and future living selves, those screwed up creatures endlessly obsessing on their inevitable faltering and failing. As our struggle through the wind gets harder and harder with each passing day, that sense of Being, With, Now, is like the hand of our loved one helping us along the road. And so frustrated, defeated, tired me creeps off into the corner and my Being, With, Now self enjoys the chance to take the stage again, if only (as she knows) for a little time.





We can be different for more than a day, and in more than one way.

The people who truly, madly, deeply, influence our lives, who help us drive our lives and not simply be driven, are few. Some we know intimately, some we know from afar, and some we know only through the lens of history and books.

It was my older, dangerous, dramatic, cousin George who introduced me to Bowie. I was 12 and had just started high school. Old enough to know I was ‘different’ without really having the words. Not old enough to know that ‘it gets better’, still less that ‘you are not alone’. And then I saw the Ziggy Stardust album cover on the floor of my cousin’s room.

Later I would discover that most of my friends’ first reactions on seeing Ziggy were “is that a man or a woman?” But mine was different. Mine was simply “ah-hah”. Though it would be many years before I could articulate this, I knew viscerally at that moment that this world where gender and sexuality could be fluid and indeterminate was my world. I knew that to be this different might be ok. I knew that I was not alone.

Like Handel, the Buzzcocks and the Clash, Ziggy opened my eyes and my ears to a world that felt more comfortable, more familiar, and more exciting, than the one I was growing up in. Through his music and his image I suddenly had a visual language and a role model for how I was learning I was.

I am not sure how it is for young people growing up gay these days, but in the 70s and 80s we were all but invisible, other than the occasional grotesque stereotype, in the media and popular culture. It was natural to conclude, even without the outright homophobia of those times, that to be gay was to be terrifyingly different. To be gay was to be condemned to the margins. To be gay meant no going back. When it comes to sexuality the 70s were firmly an era of insistent binaries – you were either/or. Something that even the gay community itself, I was to discover later, was prone to. But Bowie opened up a world to me where such binaries might not be so rigidly enforced, where as the Kinks had sung “Girls will be boys and boys will be girls, It’s a mixed up, muddled up, shook up world”.

Yes, in later years his music lost some of its appeal, my tastes moved on perhaps. But the man was always an icon, and will always have a special place in my life.

Bowie gave hope to many of us, the scared kids growing up gay in the 70s, hope that we could after all be different. But more than that, he showed us, modelled for us, that we could be differently different, variously different, that it was ok to not be sure about lots of things including gender and sexuality. We could be different for more than a day, and in more than one way.

Mr Bowie I hope the stars have a warm welcome for you tonight. Thank you.









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