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.