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The Wrong Turn

Every journey will have its wrong turns, every grand adventure its moments of doubt. Today was one of those – the day when fear gets its claws into you and won’t let go. I think I’m beginning to see the pattern though; a little bit too up one day leads to over-stretching, which in turn leads to tiredness, and in the tiredness come the dreams. Not very imaginative my dream last night – swimming happily in the Gulf of Spezia, watching the divers on the high rocks, when suddenly the current pulls me down and I am drowning. Continue Reading →

The “Rest”

So I finally got the message my amazing MS nurse had patiently been drumming into my head and accepted that “you must rest, completely” meant “do nothing”. I’ve been pretty good the last few days but yesterday I got to that point where the crutches, the rowing machine, the medicine ball called. The little voice worked its way back into my brain; “you need to fight this Cat, you need to get up and do something, you can’t just lie there”. I managed to resist, Battlestar Galactica on Netflix helped, but it got me thinking about the language of illness.Continue Reading →

The Road Ahead, The Road Beneath

I was knocked down once when I was a kid. I remember every second of that experience. I heard the coming impact long before I saw it. ‘That car engine is not in the right place’ was in my brain before my eyes even began to look for the imminent danger. Almost as soon my eyes registered the car, it was on me. All I could do was catch the terrified stare of the old man driving, and I was in the air. All of that happened as if in some dream and it was only after I hit the ground that I began to really process the idea “Oh my god I am being knocked down”. Of course it was too late, I had already been knocked down, but my brain still wanted to try and work out how to avoid the impact.

The last few weeks have felt exactly like that. At first denial: I’m not relapsing, I don’t relapse. Then rationalising – I’m tired, I have a bug, maybe I have a heart problem. As each rational explanation was blocked by rational investigation, I got a bit more desperate. I began to “sense” what was “coming” long after the relapse was well underway. I was flying through the air and heading to the ground before the idea of it began to gain some purchase in my stubborn mind. By then there was nothing to do but hope that someone else knew what the hell to do, as I didn’t. I still can’t really believe it, I still wake up and think it was a dream, and when I get up I’ll realise it was all a silly mistake. Just like when I was diagnosed and I had to be re-diagnosed 6 months later as I had persuaded myself in the interim I had misheard the doctor – how embarrassing, I thought to myself, all that fuss and I don’t have it! (I’ve since found out that apparently the 6-month re-diagnosis meeting is quite familiar to neuros who deal with MSers.) But I get up, and my walking is changed so much. I speak for more than a few minutes and I feel the tremor in my neck and vocal chords that was not there 4 weeks ago.

Soon I need to get back to work*, but how to pick up the pieces of that, when I know full well that work is a huge part of the reason I am in this situation? More specifically – my own workaholism is the problem. Like most of the academics I know I work ridiculous hours, put myself through ridiculous amounts of stress, and buy into the insidious idea that we must always be moving upwards, upwards, upwards. Over the years I have watched co-worker after co-worker suffer, get ill, sometimes disappear for a bit, sometimes for good. The subtle and not so subtle innuendo from fellow lecturers and senior management about “what is expected” – never of course clearly stated, for how can insidious pressure be exerted if it’s too obvious?

I spent many years building a masters programme I love. I love my subject – it fascinates and delights me. I love the industry community around the globe I work with. I love my students – their adventures, their triumphs, their demons, their challenges. I am privileged to have had this experience. But the cost has been enormous, and it is visible in the hands that shake, in the legs that can’t do their job for more than a few minutes without a rest, and in a voice that no longer can talk ten to the dozen for hour after hour and never lose power. No one asked me to work the crazy hours, or take the crazy pressure. But no one stopped me either. No one forced me to do this, but the system is constructed to encourage it. Meaningless targets create a totally ridiculous culture of “achievement” (aka fear), which in fact bears little relation to any actual business model, let alone represents a meaningful enterprise for a university. That in turn creates a culture of competitiveness that is antithetical to the idea of a college. And I’m part of it. I watched it happen to others around me, and I said nothing. I could see their suffering as clearly as my own, and I said nothing. And it’s not “my university” that is like this alone – I know academics all over the country who are in exactly the same boat.

I have no idea what I will do when I get back to work, other than that I will do something. I have to. When I was knocked down all those years ago the worst bit wasn’t the car that hit me, it was watching a truck head towards my head as I lay on the ground afterwards, unable to move, and not sure if the truck would stop in time. I’m on the ground again, and there’s a truck still heading towards me, but this time, I can move. And I will.

* I didn’t realise as I wrote this originally I was on the verge of a second even more serious relapse.

The Journey Continues

Well what goes up must come down, and down I did. Of course I “knew” about steroid crash. You can’t pump 2500mg of corticosteroids into your body over 5 days, stop cold, and expect nothing much will happen. And I don’t have a great history with drugs that cross the blood-brain barrier, having had bad reactions to the various antispasmodics I’ve been given over the years for my spasticity. So, if I had known then about what would happen in the c. 48 hours after stopping, would I have made the same decision? Well, yes.Continue Reading →

A Journey Begins

I paused before doing this of course – in the age of the confessional some things even now feel ‘close to the bone’. And yet… We wander through our lives as parent, friend (and ‘Friend’), child, co-worker (rant aside: I hate that word “colleague” – is it so much better to be a colleague than a co-worker, do we so despise the idea that we must be workers at least some of the time?), and lover. Along the way we reveal so little of our real lives, of our truly important experiences. We are happy to share titbits from our exciting holidays, or news of some of the day’s minor adventures or frustrations. But for the really big stuff, we are rarely happy to let it all out in anything more than a nod or an oblique aside. But…Continue Reading →

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