#JoDoesPhD Part Five: The personal behind procrastination

17 February: I am forcing myself to type something in the hope that it will make me *think* something!

Addendum: 11 March. OK it didn't work. But! I will come back here soon.

Addendum two: 21 March: Ok. So that didn’t work either. Is it possible to stage an intervention on yourself?  I think I need one. I know I need something. I’ll try and verbalise…

Yesterday I sat, and stared at a screen. My mind wondered. I absentmindedly google. MS symptoms, MS treatments. I don’t really take much in.

Skip back a few weeks. I’m in the neurologist's office at the hospital. A follow up after an MRI scan a couple of months earlier.

Skip back even further. Six years ago. The rising dread when I realise that I can’t see out of one eye. A whirlwind of appointments and eventually a label. Optic neuritis. I outrun anxiety by researching researching researching. Swallow it down deep. Occasionally it rises up and overwhelms me. My then-partner holds me up, gets me through those moments. Six weeks of gradual vision improvement and psychosomatic ghost symptoms. Eventually a clean MRI scan and vision restored. This might be a one off. It might never happen again. But there in the back of my mind, it might be a first symptom. Six years of it not being, the possible implications by and large out of mind.

Skip forward to June last year. Early morning. I’m looking in a bathroom mirror, not my own. Something doesn't feel right. I want to rub the fog from my eye, but it’s not on the surface. I slip out, not ready to acknowledge that this is happening again (not to myself, definitely not to someone I don’t want to burden with the potential implications).

The same round of tests. Eventually the same diagnosis. Ex (by now best friend not partner) gets me from hospital and takes me home. He says, ‘you know I’ll look after you if you need me to’. The gravity of that statement… Ex’s mum was his dad’s carer for decades as he battled with MS. That he would offer such a thing with all sincerity is profound. And the possibility that I might be afflicted with the same thing is at once terrifying and preposterous.

Six weeks of stress, squinting, sympathy. Support from Significant Person, and other friends whose quiet acknowledgement means a lot. My vision creeps back. Then nothing until the MRI several months later, which is stressful, but in itself not indicative of anything. I get a report back quickly. It’s clear. As are my latest eye tests, my vision fully restored. Then nothing again, until the neurologist.

I manage not to think about it until it comes around. She’s nice. Probably younger than me. Professional, personable but I sense she’s really listening. There’s the obligatory medical student too. She does the normal stuff; tests my reactions, coordination, optic nerve and talks about symptoms or lack of. She’s impressed when I explain I once had vertigo and Significant Person told me to try some crazy thing involving throwing yourself sideways (which turned out to be the Dix-Hallpike test and Epley Manoeuvre). She concurs it wasn’t a symptom.

Then she says it. Two episodes of optic neuritis ‘could be’ enough for a diagnosis of MS. She explains that it’s pertinent because drug treatments are a possibility. Things that might delay relapses, or limit the damage long-term. Rational me kicks in. I’m ok. I’m ok. I’m ok. A diagnosis doesn’t mean anything will change. Doesn’t suggest a trajectory. And anyway, there’s a huge spectrum, right? I don’t press her on if she’s actually making that call. I can live in this liminal moment where my record doesn’t have that label stamped on it and I can make that my reality. She orders a heap more tests. A lumbar puncture, cognition tests, another MRI, this time of the spine too, a chest x-ray, blood tests. In a blur I go to x-ray and the blood clinic. I’m ok, I’m ok, I’m ok.

Afterwards, I text Ex and Significant Person. I tell them I’m ok. That I didn’t learn anything new. That MS is no more a possibility now than it was three hours ago when I walked in. Ex phones me straight back and asks if I am ok. I know he means, it’s ok if you’re not. I fight back tears. His acknowledgement that it’s alright to feel scared and blindsided and to let it overwhelm me acts like a life-buoy and lets me refloat myself, so I am ok again.

The tests come back one by one and I’m mildly amused by the things that I don’t have but no clearer on what, or if, I do. Significant Person reiterates the positive stuff – even if that’s what it is, it could end up barely affecting my life – and I snipe that I know, but completely fail to explain that what I need is a hug and a distraction and not to think about it. (Later, I start a fight about (ostensibly) something else, everything comes out and I feel better, but guilty).

So the days click by. I have a steady fog of anxiety. A bubbling, rumbling magma-chamber below the surface. I convince myself I feel fatigued. I feel wobbly. My brain isn’t working as well as it should… I let this distract me without really acknowledging it, even when it makes me absentmindedly google the disease I do so on autopilot. When I’m occupied by things that engage me, by and large I’m fine and symptomless.

Last night I went to a talk where Rebecca read a passage from her Masters, a creative writing thesis. She talked about lying in a tent in Antarctica at once aware of the immense privilege of being there, but also feeling like she couldn’t breathe. That she might be sick; really ill sick. That she might die tonight, but knowing that it was preposterous to think that. Exhaustion, anxiety: these are the likely culprits. But if she took the diazepam stashed away, perhaps it would be contraindicated and mask real symptoms, so instead, lying in the dark…

And it resonates. I am not going to die tonight. I am in a privileged position. This PhD is an amazing opportunity. There’s probably nothing wrong with me. Why am I letting a whole load of what ifs gnaw at me? Prevent me getting on with the things I want to do? Telling the people that matter the things I should about myself? Why can’t I write anything? Why am I putting the important stuff off, fiddling with trivial projects instead? Why why why?

And I think it’s because writing means making things real, and if I don’t, I can stay suspended. But now I’ve shone the light on it, perhaps I can move past, and onwards.  



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