Three months ago my world started to unravel, or rather I started to pay attention to those frayed edges and trailing threads that had in fact been appearing for some time. This week I started trying to knit it back together again. I’m lucky enough to work in a university – sickness leave is generous, my incredible friends at work are supportive beyond measure, and my Dean has been kind enough to agree to a very gently phased return to work (three half days this week rising over 6 weeks). After three months at home, dealing with rather more basic problems such as walking, swallowing and speaking, my mind has turned of late to the problem of being “a someone” in the world outside and not just a me at home. But each time my mind turned that way, fear was quick to jump on my shoulder and whisper not-so-sweet somethings in my ear. So it was with some apprehension, and a good dose of pragmatic Scots “ach wheesht and get on with it woman”, that on Monday I went into my office for the first time in three months. It felt exactly the same as the day I walked out of it, ill and frightened and about to give up the pretence of being ok. The door sticks a bit and there is a fine patina of dust everywhere I suppose because someone had been in and installed a smoke detector. But otherwise, all is just as I left it. It is only me that has changed.
The external changes, the physical ones, are as one would expect after an acute MS relapse. I move more awkwardly and slowly, I tire quickly, my voice (though much improved) is still not right. But the internal ones are (perhaps foolishly) unexpected. I am fearful – for the first time in my life I no longer trust my body or believe blindly that I can “be someone” beyond my safe haven here at home. It probably would have been wiser had I reached this point some time ago; my body has not been functioning appropriately for a woman of my age for years and truth be told my ability to cope at work has been showing signs of wear and tear too. But for someone who spent much of her childhood looking for ever higher and more forbidden places to climb into, ever steeper hills to career down on a borrowed bike way too big for her, this kind of fear is hard to accept and harder still to adjust to. Hence for a long time I didn’t. I ignored or ascribed to other things or a “temporary flare” my symptoms. I tried to exercise them away, and more recently I turned to the paltry array of pharmaceuticals medical science can offer us MSers to delay the inevitable moment of acceptance.
I suppose my body got fed up waiting for me to wise up. So it told me in no uncertain terms exactly what it thought of my ill-advised approach (pun intended). I always thought the challenge was to learn to accept having MS, or being disabled. But now I wonder if the big challenge is learning to accept being scared. Being ill is truly a state of mind, brought about by physical changes of course, but most deeply and truly manifest in our minds not our bodies. Learning to love my fear, and the things that I can no longer do is just as important as learning to value myself for what I can still do. Both are pre-requisites for engaging with the outside world. It’s nothing new of course – just Ying and Yang. Learning to live with the fear and carry on anyway, that’s the heart of matter when you live with a degenerative illness (especially one as unpredictable as MS).
Birth, death, falling in love and illness all leave us feeling suddenly aware of how strange life is, of how “other” our normal lives really are. I remember how strange being in the world felt in the weeks after my children were born. You spend so much time with this tiny person, staring and staring at their faces, falling in love deeper and deeper, that when you see adults their heads seem grotesquely big – ridiculous fleshy obscenities compared to your unutterably beautiful child. Similarly, I remember sitting in a park after my beloved Norman died unable to connect to the Edinburgh Festival madness that was erupting all around me. I felt like a grief stricken hologram in the world of “life goes on”.
This week, as I gingerly re-enter the world of work, I have been reminded that I can be brave and push my self back into that strange world. Everything seems so familiarly alien – reminding oneself how to manage your time, be in a meeting, work out a project. As I have begun to pick up the threads I find myself looking around me deeply almost for the first time. I know these people differently now. They know me differently. The main thing that stands out for me from this week has been them. My friends and my family and my loved ones are all that really matters, and all that I really need. My workmates have been amazing – all my fears feel tiny and manageable with them around. Their patience and support and thoughtfulness have been truly humbling. And I realise that knitting myself back together again is not about finding all those lost threads, but about valuing and honouring the help and friendship of all those near and far who have helped pick me up.
Things are not the same. I am not the same. This week I began to feel a real possibility that I can make this work – not by making me back into my old self, but by thinking me into a new way of being at work. It’s driven by my old friend fear of course – I know that I can never go back to being and working the way I was before this. My fear is right, and good. I can’t. I mustn’t. But can I maintain my post, my career, and yet make the changes to how I am “Dr Cat Macaulay, Senior Lecturer” that my MS demands? That’s the challenge and the story yet to be told. This was in some ways a week of many fears – of opening Pandora’s Box. In the myth when all the frightening things had flown from the box there was one thing still in there – Elpsis the spirit of Hope. This week with the help of some wonderful people my fears have been let out the box, and now I can see clearly Hope lying there still. Which is a great way to end my first week back.