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On (Lack of) Community

I had reason recently to mull over what the idea of “community” meant to me. And it wasn’t an easy conversation with myself. Which is odd as I have spent most of the last 15 or so years thinking very heavily and theoretically about what community means to others. I’ve explored communities of geography, of interest, of practice. I’ve explored communities online as well as off. But in all that time I’ve had a rather taken for granted relationship with my own sense of community, never really questioned it too deeply other than to be aware that it did not feel as settled as I imagined it ought to feel.

‘Well you are from there but you are not really part of the community.’ I was told recently. That I live in one place and commute to work in another was part of the challenge. It rankled a bit (always a sign there’s a something there to explore!), but I couldn’t figure out why at first. Of course at some level it was true. I leave my town three days a week most weeks and head off to work elsewhere. Furthermore, not as often as I would like but more than most I leave the country altogether to be with my partner in Germany. It’s a complicated set up and living with secondary progressive MS means that on the other day of work, which I do at home, or on my precious three days off I am not exactly a vibrant and active community member in my town. So why did it rankle?

The roots of that go back quite some way, to the time when I realised that coming out as lesbian in small town Scotland in the mid-80s in effect forced me out of an easy relationship with place or even family as the source of community. Like most of my fellow queers at that time I had to leave for the city, go to where the gays were, find community there. And I did. Within a couple of years I had not only found community but I was right at the heart of it. Heavily involved in LGBT activism, writing for LGBT publications, running a gay cafe, working in gay nightclubs, I lived and breathed ‘the scene’. Suddenly the painful years of fear and discomfort were over. I no longer lived in dread of being outed. I no longer sat looking out my bedroom window at night aching to be elsewhere… somewhere… anywhere, that would accept me as I was and not as I was supposed to be. Until I had to go home to visit.

Suddenly all my new found liberation was shaken, I’d go back to the place I had lived in fear, had fought to escape in order to feel free enough to explore my identity fully, and be taken back to these fearful and closeted times. A horrible tension between desire to be with my family of birth and with my family of shared struggle developed. I began to feel disconnected and uncomfortable anywhere but the scene. It’s hard I think to understand what the early to mid 80s were like for people discovering their sexuality did not follow the script. Our first gay demo in Edinburgh against Clause 28 saw a tiny handful of us standing on Princes Street enduring the aggressive stares and verbal attacks of passers by. Our cafe entrance was regularly surrounded by a large and threatening gang of local youths who would harass our patrons and lob the odd brick through our windows. Walking through the city at night alone was not advisable when you were a tall dyke with shaved head and leather jacket. You learnt to assume that safety and ease were states only found when surrounded by your own. And your own were most certainly not to be found in your home town or even your family home, Wherever I went when travelling I immediately sought out the ‘gay ghetto’, felt ill at ease until a gay cafe or pub or centre had been located. My sense of community was entirely one of shared oppression.

Of course like any community we had our schisms. Bruising battles between the genders, or around the issue of the status of transgender or bisexual people revealed ‘the community’ to be just as fractious as any other. But in adversity there is sticking power. No matter how other I felt within the LGBT community my otherness was not enough then, or now, to disconnect me from the most powerful sense of community I have ever had. I don’t know what it is like for young LGBT folks now, certainly they have more ‘rights’ than we did, more positive role models in the media, but I can’t imagine that the sense of otherness in ‘straight’ society is so much diminished given the heated nature of the side taking every time equal marriage rights comes up in the media.

Yet as I am sure today’s young LGBT folk will find in their turn, life moves on. Work, relationships and eventually children and illness meant that I became more and more peripheral in my community, and it in my life. My ‘community membership’ sustained more by a willingness to be out and other in straight society than by immediate involvement in the LGBT community. Probably most profoundly of all, in the end the challenges of a disability forced many unwelcome choices around how hugely diminished physical and cognitive energies should be spent. Much as my physical reach in the spatial world has shrunk, so to has my social reach in my various communities of place and shared experience/practice/interest. My challenger was right, I am in but not really part of my geographical community. In fact the disengagement is even greater than that. I am in but not fully part of many communities I owe allegiance too or feel some sense of identity with – town, ancestry, sexuality, disability, professional, political.

I could rest with that thought but one of the best things studying ethnography taught me is not to rest with the first plausible train of thought that pulls in to the station. So scratching at the rankle eventually surfaces a deeper niggle – that maybe I’d always have had more of a ‘weak ties’ relationship to the various communities I am aligned to. I do know I have always struggled to feel safe in any community bar the LGBT one. Even as a child I can remember feeling a mixture of desire for and mistrust of the idea of ‘belonging’. After all I chose in the end a profession, ethnographer, that actually requires me to spend my time as a ‘professional stranger’ in others’ communities and lives. Maybe we all feel like that anyway, maybe community is just another word for shared experience of some kind at some time for some period? Maybe the sense of not quite in and not quite out is how most of us experience that thing we call “community”. Or maybe it’s just that community does not easily signify belonging or safety for me. I find that easily with people on a one-to-one basis but LGBT community aside have never felt it elsewhere. And I don’t really know why.

My challenger was right – I am from but not fully of many communities and I am not sure if that will ever change. But I am wondering today if it should, or could.

Why did no-one ever teach me how to be vulnerable?

Why did no-one ever teach me how to be vulnerable? Yep. That’s just the kind of thing you think at 3am when you’re still hoping for sleep.

I was taught that it was good to be brave, and kind, and strong, and fair. Consequently I spent a lot of time being taught how to be those things. But no one ever taught me how to be vulnerable. I was taught how not to be that (like that’s really going to happen, my teenage Woody Allen loving fake New York Jewish inner voice snaps back).But I was never taught how to be this. How to be vulnerable.

Is it evolutionary? Some need to not reveal our vulnerability for fear of someone bashing our prominent forehead skull bones in as we sleep in the cave? Is it a by product of my Protestant influenced culture in which independence and self sufficiency are held in such high regard it’s hard to imagine anything else? Or maybe is that what religion is for; to be the safe space to hold your vulnerability? I don’t know, the last time I was in Church in earnest I was 11 years old and wondering why god and everyone else hated what I had just learnt about myself, and what to do about it.

Whatever! (Oh yeah, she’s back my young remembrance of selves past, and she’s pretty snarky this morning, maybe she needs a coffee and a bagel?). The thing is I am, vulnerable, and I don’t know how to do this. So there I am at 3am struggling to sleep, a vague sense of anxiety swirling around like one of those ridiculous foamy sauces that over priced restaurants use now that jus has gone downmarket.

I remember before this, I never for a moment considered my vulnerability. I routinely took the most ridiculous risks. As a kid I spent a huge amount of my time climbing into the highest and most inappropriate or forbidden places I could. That weird musician’s balcony thing in the ballroom of the hotel my parents managed? No problem, let me just stack up a pile of tables and then some chairs and then haul myself on the lowered false ceiling above the dance floor from where I am pretty sure, yep, there you go, I can jump on to the side of the balcony and flip over. It was magical by the way, a dusty unused space from a lost time with a door that had a key in it – a key! – that when opened disappointingly turned out to be the other side of the ‘mysterious’ door at the top of the back stairway we were sure must lead to a room full of forgotten treasures. Climb out on to the roof of the petrol station behind the hotel, jump across to the St John’s Ambulance station building, and from there to the rooftops of house after house? Why not? No one ever looks up anyway.

Right up to the year it started I would thrill at the opportunity to speed dangerously fast around Picardy Place roundabout sneaking around cars and buses. Would enjoy the delight of outpacing the buses and cars to nip across some busy road. Would happily wield power tools without eye protection (well till the incident in the eye hospital with the eyeball out of socket scenario as a sliver of metal was removed from where it should not have been).

I was truly invulnerable, until the day a kindly if rather distant Professor told me that the best thing to do was to keep a stiff upper lip and not sit down and I wandered out of the Western General Hospital and stood in the sodden grey at a bus stop watching the rain drops slouching down the dirty, scarred and cigarette burn pocked plastic window in shock. We all have to dance this awkward uncle at a wedding with a drunken bridesmaid dance of course. We all have our triggers. Mine is my MS. Of course.

It started then, in that dirty little bus stop in the rain. Or rather it ended. The time of fearlessness. The time of feeling angry, sad, alone, happy, excited, in love, in hate, scared, nervous. All those things. But never vulnerable. Never this lonely little rodent chewing contentedly on my sense of safety and security. This whole disabled thing. Setting out each day with that rodent on my ankles. Can you make it through today? What’s that cramp, is that going to build? Oh god these stairs, will I fall? Why can’t I remember that keyboard combination, that name, how to spell that word, *again*? In themselves not so world shaking, all eminently cope-able with, but add in a sprinkle of stress or pinch of fatigue and then…. light blue touch paper and retire.

I was listening to a public figure on the radio yesterday being interviewed, struggling to reconcile his need to not be seen as disabled with the reality of a body that just doesn’t do what one could reasonably expect from it. The need to be seen as not vulnerable. The reluctance to ask for ‘special’ accommodations or help. The desire to “show ’em”. The painfully familiar accounts of the efforts that go in to appearing normal, to managing the pain and the fatigue that sap brain as well as body energy. Somedays it becomes too much, the rodent’s friends flock around your ankles and begin to head towards your knees. I realise a pattern now.

I have so many “hacks” I use to get through my days. Tricks and adjustments I make that give me the best chance of balancing energy, ability and pain levels so that I can appear normal. So that I can tell myself I am normal. Because really it’s me I want to fool, not anyone else. It’s me that needs to feel normal. Then a hack fails. Almost always because of some stupid thing in the environment. A physical obstacle that should not, need not, be there. An overly complex computer system that challenges me when the mental fatigue has kicked in. A clumsy and difficult to use application meets a badly designed bit of hardware that meets a deadline and I am left staring into my inabilities. What for ‘normal me’ would be annoying becomes a terrifying reminder of the cognitive impact of MS, leaves me paralysed in the face of its unreasonable cognitive demands. Or, as yesterday, an unexpected walk that sapped my carefully plotted energy reserves for the day. And the rage and the black powerlessness that comes when the world snatches away your best laid plan, leaves you flat on your face (sometimes painfully more than figuratively). You want to scream and shout, sometimes you do, but them immediately regret it because of course you have revealed your vulnerability.

Yesterday I hauled my way up the exposed and interminable ramp at Leuchars Train Station on the way home, the station where earlier that day the arrangements for the Open Golf, ignorant of the needs of the disabled passenger, had forced an unexpected and stressful extra walk. Up the ramp finally I turned the corner to the bridge across the tracks and met a huge throng of golf spectators disgorged from a bus and rushing across the bridge I was crossing. The rodents overwhelmed me. Against the crowd, exhausted, crutch being bashed from under me by impatiently oblivious tourists, or worse tutting impatient tourists staring at me angrily as if I had deliberately contrived to be the cripple in the way of them getting to their train on time, I gave in to it. I felt vulnerable, truly vulnerable. I longed for my dad to scoop me up in his protective arms and snarl at these people, and whisk me off to safety and soothing words as he wiped the tears that were by now threatening my cheeks. Maybe that’s the difference between fear and vulnerability? Your dad can make fear go away. But no one can make vulnerability go away, because it is not just a feeling but a state. An un-bidden and inescapable state. A pit only you can claw out of, though it never really lets you get to the top. Once it has you, the question is simply can I get far enough up the slippery slope to forget it for a while?

And so I lie there at 3am and ask myself why did no-one ever teach me to be vulnerable? How to hold this state gently, how to live comfortably in this pit? My mind turns to my children lying asleep nearby. Have I taught them this? How could I teach them this? I think of work and all the moments of vulnerability it throws up for all us, and how our frantic attempts to struggle out the pit stop us from connecting with our vulnerability, promote our revulsion at vulnerability in ourselves and others. So I turn to the only things I know that can help; I put some music on and decide to wait for the morning and write. Perhaps that’s how I hold my vulnerability now – by writing it out? Here on the page it seems softer, almost kinder. It has things to say to me, it wants to hear what I have to say. Maybe we are the only people who can teach ourselves to be vulnerable after all.

A terrible, inescapable, beauty


It was the incongruity of course – driving through that beautiful landscape, Grace Jones seducing the summer holiday soundscape with her version of La Vie en Rose, you so placid as your eyes glided across the evidence of war all around us. The war you knew so well, you the reluctant soldier trapped by time and fate into something you did not want but could not escape. We sat in your tiny flat later that night, drinking, sharing stories, flirting lazily with no intention of doing anything. You told me of your island, off the coast of Split. Your family had lived there on and off for centuries, your blood was in that soil and those waters. Your passion for the place corrupted now by all that you had seen and done, by all that had been done to you. We sat on your sofa and smoked and drank and laughed about the bar we had been in earlier where suddenly a couple in full formal gear had begun ballroom dancing. It was a thing here you told me.

We listened to the Clash and talked about music and your love of London and of killing and what bullets and shrapnel do to the human body. Your words ground to a halt suddenly as you placed it in my hands – that piece of shrapnel you kept with you now to remind you off what could have been and what was. It had found your friend and not you. It was your fate, narrowly escaped, and now kept close as if to ward off the next bullet, the next bomb. It wasn’t large, about the size of my fist. But as its cold jagged edges touched my skin, and my hand adjusted to its unexpected weight, saliva began to gather in my mouth and tears in my eyes. I thought I would vomit. It was so heavy, so relentlessly sharp. I could not bear the weight of its horror and almost dropped it. You watched me, and your placid reconciled eyes took in my horror. You were past that now but maybe you needed to see it in my eyes again?

Early the next morning, as I lay in my room in the villa the aid organisation I was working for had rented as a base while we picked our way through the byzantine bureaucracies of UN and Croatian authorities, a drunken passing solider back from the front would let off a round of machine gun fire. And I would learn that my fear reaction was to run towards gunfire not away from it. I knew in that moment that were this my war I would not survive. I didn’t have your instincts. Later, freshly back in Edinburgh, I would walk along Princes Street and jump as the one o’clock gun was fired. I would look into the eyes of the passing locals and tourists and wonder if they knew how easy it was to be swept into a torrent of horror. Wonder if they would run away or run to the gunfire. Wonder if they would be the killer or the killed.

Perhaps my immeasurable hatred of authorities and bureaucracies and paperwork comes from that time; endlessly prostrating myself to grey little men who whether on the ‘good’ or ‘bad’ side were united in their insistence on making you wait and wait and wait while people suffered and died as they stymied our efforts to get aid to the people of northern Bosnia. I left my patience in that place. Certainly my naive belief in the basic goodness of people was left there, in my encounters with those grey men, and with other more colourful men happily exploiting that horror for gain financial or ideological. I know my fear of bigotry, nationalism, xenophobia, already there of course, was forged into a steel as hard as that shrapnel in that time, Most dreadfully of all, it is where the seeds of a learning that would take a few years yet to “flower” were planted, the learning that good people sometimes really do stand by. Over and over again people there talked of their certainty that something terrible would happen in Srebrenica, a town near our Bosnia centre of operations. A couple years after my time there I was to turn on my radio and hear exactly that – the massacre in Srebrenica had come to pass. Today my radio is filled with memories of that terrible time, 15 years ago.

It’s a place I now see so often on my Facebook feed as friends holidaying there marvel at its beauty. Jolted back, the combination of sickness and sadness and excitement grips my stomach. What was it Yeats said – a terrible beauty is born? I have never been back, I have no desire to see that place again. But when I see those photographs of happy smiling holidaymakers, that beautiful sea behind them, I remember you. We sat by that water once and you told me of a Croatian saying – if you put a finger in the sea you are connected with the whole world. I think of you and that piece of shrapnel and your reconciled eyes as your heart accepted what your head could not. That this was inevitable and inescapable. Like the sea.

Ghosts, Butterflies and Mountains

P1000251@0It took me a long time to realise that your ghost – so often found following me as I walk through the streets of Glasgow, Edinburgh or London – is not the ghost of you but of me or rather of my selves. I’d be somewhere that we had been and suddenly you would be there so close I could smell you, hear your breathing, smell the cigar smoke and strong coffee that instantly signified you though you had long given them when you finally gave up this place. Sometimes it was so overwhelming I’d have to stop, or brush away the tears that would swagger down my cheeks as if to slap me and remind me that I am not in control of all this.

It would happen as I passed the cinema in Glasgow you tried to smuggle a too young me into for a screening of the film Gloria. It would happen sitting in the pub in Soho we had lingered in one hot day as you took a break from editing your latest film. I was fresh from my city-dreaming small town life, thrilled to be in your company as people came up to say hello and ask you about the documentary you had just won an award for. You were a little pleased at how thrilled I was. It would happen as I passed the bench I sat on in Edinburgh’s Princes Street Gardens the day you died, the day I left your body in the Western General and contemplated life without you.

My first self tried to mould herself in your eyes – wanted so much to see what you saw, know the world as you knew it; questioning, brave, curious. My self was your self, reflected in a new life. My self was your lessons filtered through a much smaller, duller lens. My self had no idea who she was, or what she wanted to be. So in her indecision she looked to you, imagined a model of her future self in you. It was a good choice. I don’t regret it, though it made the loss of you so much harder than I could ever have imagined. Because when you died my sense of self was shaken, when you died you took a lot of my selves with you.

Perhaps that was why I was so convinced that the ache I felt when your ghost fell in step behind me was for you. I would feel you and be swept away again in those last days and the moments when all that could have been and all that was somehow found accommodation with each other. I was astonished those last days how peaceful you were. How little fear and regret there seemed to be. How deeply you drank in the immediate present of that body failing quietly in hospital and then hospice. But of course it was not you I was aching for really those times I felt your ghost behind me. It was me. Myself. My selves.

Everywhere I look in my working life these days people are talking of taking one’s true self at work. It’s a manifestation of a deep desire for change that is washing across this country. But every time I hear them talk of it I can only think “but which self?”. The girl in Soho, or the child in the cinema, or the broken woman on that bench? The self that chooses not to remember that she has MS, or the one that can’t forget? The one that feels such a clear sense of what might be here, now, with all this swirling around? Or the one that has to talk herself out of the fear that she might be wrong?

You gave me so many of my selves. You gave me the self that knows that the right questions are much harder to find than the right answers. You gave me the self that knows that whatever our fears tell us we can choose to ignore them. You gave me the self that feels such intense indignation at injustice she can barely voice it. You gave me the self that knows that life is to be gulped at, savoured, endlessly explored no matter how tired or limited we feel. You were the first person to notice that I noticed the things other people didn’t. You were the first to notice that I needed to learn how not to let that paralyse me with inaction and indecision. My selves have missed you so much these last years, never more so than now.

You would have delighted in this now, this Scotland, this time. You would have shivered in excitement at these possibilities. A time that exudes everything that decades navigating the world’s hell-holes of cruelty and inhumanity told you we needed – a time and place where people have fallen in love with democracy again. Every day my selves take themselves to work and try (not always successfully) to put the best of them to the fore. The ones you gave me, the ones that are brave, that believe that things do not have to be this way, the ones that don’t need approval, and the ones that know that nothing ventured nothing gained applies never more importantly than when the thing to be ventured is self. My selves are lucky – we have found ourselves in a place full of others seeking something new, something better, something that will give energy to making the changes this country seems so electrified with desire for.

Of course some of my selves are afraid of this idea, sure that we are misguided and exposing ourselves to danger. “You think they want this but they don’t really.” “You think you are in the right place at the right time but you are imagining it, they’ll see it soon enough and you will be out.”. But the selves you gave me are strong, and have been around a long time. They were forged in those moments as you talked to me of Soweto, the Golan Heights, Biafra, Afghanistan. They were forged in my horror as you described the horrors you had seen. They were forged in my realisation that all that could happen to anyone if we didn’t love and fight for democracy and its institutions enough.

I thought it was the ghost of you that was following me, but now I see it is the ghosts of the selves you nurtured. Did you know I needed them now? I’d like to think you did. I’d like to think you sent them back to tell me not to worry which self, or selves, I take to work, rather to spend more time noticing how many other selves there are. Myself sounds so lonely, sad, a thing we shape by ourselves alone. But really my selves are just butterflies that others protected and nurtured in the chrysalis, especially you. I wish you could see my selves now Norman, because suddenly they have found themselves in a huge crowd of other selves trying to work out how to love democracy better, how to keep the horrors at bay better. A single butterfly is easily batted aside and crushed. But a horde of butterflies can move a mountain. Me, my self, my selves, have realised that we are not alone. Thanks to you me, my self, my selves have long been trying to move a mountain. This time, we have company. Inside every one of my selves there is a bit of you  Norman, you are still here with us. All those mountains you tried to move? You are still trying. This time, you, we, have company. This time, that mountain might just move after all.

Losing my self in the summer heat


I remembered it today, walking through the Edinburgh summer heat (yes we do sometimes get to the stage of legitimately being able to name the temperature “heat”). I remembered that day in the forest in Croatia.

There’s a particular shimmer in a lush forest in the summer heat; a combination of pollens gently dancing through the canopy on the warm sweet air and sunlight nestling conspiratorially under trees as if it too needs some respite from its own fierceness. That day in 1992 the shimmer was everywhere as we drove into that forest in the hills above Split, a bedraggled gang of exhausted aid workers seeking reward in the forest for a day of superhuman efforts. We’d been hauling huge quantities of heavy engineering goods off our convoy of lorries, recently arrived at the UN Protection Forces base in Split, and onto our collection of smaller trucks and Land Rovers in readiness for their long haul up to Tuzla in Northern Bosnia. Orange dust, sweat and sunburn had painted us all a range of shades of exhausted by the time we were done. Our redistributed cargo was eventually to play its part in rebuilding that crucial resting place for the refugees who were and would be streaming out of places too sadly infamous in the rear view mirror that is time – Sarajevo, Srebrenica. The Balkans War was still the war in Former Yugoslavia in 1992, we couldn’t know then how many years were to pass before Tuzla would still again.

The sun had been uncompromising in its ambition to punish us, especially the Scots in our group, so constitutionally ill prepared for temperatures above the high teens. But we had laboured diligently, aware of the short timeframes that haunted every step of our operation. Customs approvals from the Kafkaesque nightmare of the Croatian authorities and places on UN convoys that would offer the protection that vehicles, goods and staff would need if Tuzla were to be reached were not going to wait. I’d always quite enjoyed physical endeavours that required endurance – long distance runs, cycles, swims, I got a kick out of them all. So a perverse bit of me had enjoyed seeing how much my body could take during that old school logistics challenge. I had expected to feel it of course, the after effects of the heat and the effort. It, but not this.

As I sat by the too green river in the too green forest enjoying the cool green air I knew something was not right. Instead of limbs grumbling with aches I felt absences. Instead of weakness I felt such an intense slowness I thought I would end up going backwards. I looked up at the canopy and felt all at once not so much out of body as devoid of body – a disembodied remembrance of my corporeal self with nothing left to ground me to my surroundings. It was disconcerting; though I was a bit surprised to find I was less frightened than curious. I found myself moving without knowing how and sat by the river’s edge (we’d come seeking this spot famed for its forest river knowing that the cool water was exactly what we needed). I was too frightened to swim, moving on the earth when you cannot feel yourself, when you have lost your grounded, earthly, self, demands more than enough blind faith. Trusting yourself to the water under those circumstances would be truly a step too far.

I rationalised it away to heat exhaustion, while my essence sniggered at my rational self and whispered in her ear “You know that’s not true. You know this. You can feel this inside there.” But rational self was whistling a happy sitting in the forest tune, not able to acknowledge what “there” her essence was alluding to. That came later that night after a visit to another aid agency’s temporary digs. A group of us wandered home to our place through a darkness only shyly disturbed by moonlight reflecting off the water. As we picked our way along a narrow sea wall I realised that without my eyes I simply could not balance. Though corporeal self had returned after a while resting in that cool forest, now balance had left. This time essence would not be ignored, this time the pieces fell into place. “Told you so. There’s something wrong in there. There’s something wrong in your brain.”

It would be many months before Medicine would bring that wrong fully into the world when it christened it with a name– multiple sclerosis. But that night, willing myself along that wall, I knew it. I felt it. I felt the wrong growing inside me, learning to play games with my sense of self, with my being in the world. Later medicine would teach me it was the heat that did it. MS and heat do not get on, symptoms that have been lying dormant are roused ever more aggressively as core body temperature rises. That day in the forest my denial tricks were more effective – in the daylight surrounded by chattering friends and soothed with wine and food they had purchase on my sniggering essential self. But denial doesn’t change the fact that I lost my self that day in the forest. For all I know she is still there. Actually I sometimes like to think of her like that – in that shimmering light, dancing with the pollen, resting under a branch with the sunlight. Knowing her as I did, I’d say she’s happy there.

In time I would find another sense of self, one less dependent on a stable sense of being in the world, one more fluid and adaptable to the ebbs and flows of physical self the river of MS sweeps us along on. So today as I walked through Edinburgh in the summer heat, feeling that now more familiar sensation of self-lessness: limbs beginning to move as if in a slow motion if asked for more than a couple of minutes of moving without rest, awareness of corpo-reality gently disengaging like a ship about to leave dock. Today I remembered that day in the forest not with alarm or denial but with a gentle sense of recognition of my truth, my true corpo-reality.

I lose my self in the summer heat. I find myself again in those memories. And though part of me would give anything to have her back, my lost forest self, another part (the new essential me?) whispers “But what would you lose? Where would you be now if you had not lost your self in that forest?” It doesn’t matter of course, there’s no going back with MS. Just forward. Constantly forging a new self to navigate the rocks and white water the disease pulls us into. We all battle our rivers, few of us will get to the sea without encountering the rocks and the white water. My forest self was taken from me, but I got in her place an ability to stay afloat in pretty challenging waters. And for that I truly am grateful.

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