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.