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The Ethnographer’s Wall: Recovery as Fieldwork

I spent a morning last week doing a three hour teaching stint in the studio, a pretty strenuous one at that; lots of activity and focus needed. It was the longest stint of teaching, and probably of moving around with little rest time, I have done in 4 months. I was teaching a group of design ethnography and service design masters students an introductory class in observational research. I have taught a variation of this for the last three years and every time I do it it gets more and more stripped down. I talk to them about the challenge of simply resting in one space observing in an era when we are rarely without multiple distractions to hand. I talk to them about the challenge of occupying different points of view on both cartesian space and on human experience. How can we as subjective beings ever truly see the world as other’s see it? Why are so wedded to particular ways of ‘surveying’ the environment around us, or of thinking about people and events as their action unfolds in front of us? I talk to them about the challenge of trying to simply be fully present in the world, and of juggling the need to try and get to that point with the need to ‘deliver findings’ to clients who are usually only dimly aware, if at all, of the weight of debate that surrounds the idea of an ‘ethnographic finding’. Epistemology weighs heavy on the shoulders of ethnographers.

I took my students out of the studio minus all their devices. In the past I did this because I didn’t want them to be distracted, now I do it also because these devices are so much part of our identity that leaving them behind can be a very useful ritualistic nod towards ‘attempting to cast off self’ – a useful thing to do if you are an ethnographer entering the field. I sat them on the steps between the 6th and 7th floor of the art college I work in, and asked them simply to look out the window. This bit only lasts around 20 minutes, but it is always fascinating to see how people react, and think about how we take in the world habitually and how we might change that for the purposes of ethnographic exploration. There seem to be three basic reactions. Some become very focussed on me – I ask them to look out the window as I talk – their eyes flit back and forward constantly as if hoping that I will make sense of what I am sure must feel quite an odd and perhaps unexpected moment. Some become very focussed on the scene ahead, eyes variously flitting around and then stilling intently on one spot. And some manage just a few moments before they clearly become uncomfortable or bored or irritated.

Pushing them through this is important, we rarely in our everyday worlds just ‘take the world in’ – even when we are absorbing some beautiful scene we tend to observe only ‘that scene’ not everything else around it. As an ethnographer I need to be able to flit between scenes, between scene and context, between environment and events. This kind of observation requires a strategy, but there is no one size fits all strategy as we all observe the world differently. Quite how differently I was unaware of until I started to teach this class. Some people take in the world instinctively as a set of shapes to scan, some are heavily drawn to people, some to the near field first, some further afield. Some scan quickly, some slowly. Most never look up (my youthful love of illicit rooftop exploring taught me that very early). But we all, in our instinctive selves, have a tendency to give up trying to see the world differently very quickly. Of course there are good evolutionary reasons for this – too much time engaging with the world might blunt other useful cognitive processes – such as “oh my god a lion, run away!”. This facility to give up observing quickly is what an ethnographer has to fight. There is a kind of ethnographer’s equivalent to the runner’s pain wall to be crossed – the fear of coming up empty handed wall. I’ve come to love that wall.

There is always a moment in the field, even in the most interesting project, when the mind starts to worry away at the thought that your research is a monumental waste of time and you will never find anything ‘interesting’. The wall is particularly present in purely “observational” sessions when you don’t have the focus of a human being you are interviewing to distract you from what you are experiencing. Most ethnographers are intensely interested in other people’s lives, and interviews are driven as much by the interviewee as us. They are rarely dull or boring. It’s often only after the field visit that we begin to worry that our interview is throwing up nothing. But in observational research only we are driving, and though we are usually observing people acting in context something about the lack of direct communication allows the mind to reach the wall earlier. Few of my students come back from interviews saying it was boring and they found nothing – those worries comes later as they begin to analyse their data. (They usually have other anxieties, such as ‘I was so bad’, or ‘My interview protocol was rubbish’.) But they often come back from observational field trips wracked with anxiety that they ‘have nothing’. Almost always one of two things has happened in that case – they ‘gave up’ too fast either by leaving the field before they should have or by staying physically present but unable to maintain the intensity of focus, the presence, in the field that they ought to have.

Sitting on the steps I try to encourage them to ‘see beyond’ their habitual ways of engaging with the world. To think about how they tend to take in things and then plug the gaps their normal routine leaves. I’m a big picture, shapes and sounds person. I tend to engage with the world as shapes, usually by seeing the world as a snap shot, scanning the distance first, and hearing sounds as ‘stories’ (which are of course simply inferences I draw around the sounds). When I am in fieldwork mode I need to remind myself to attend to people as closely as shapes, to near as well as far, to detail as well as shape, and to attend to sounds with a descriptive mindset and not just an inferential mindset. When I attend to people my first take is almost always focussed on their actions, I need to remind myself to observe them descriptively too, to try and see them as people and not just actors in some unfolding event. I cannot tell my students how to observe strategically as they all observe habitually in different ways.

Next I remind them that of course where we ‘are’ (in cartesian space or emotionally, culturally, intellectually) – our starting point of view – is inevitably partial and that we need a strategy for changing that point of view as often as is practical. The more points of view we try and adopt, the greater the likelihood that we will begin to get past our habitual ways of seeing, or being, in the world. But all of this is I think much easier to point out to people than the benefits of not shying away from the wall. Like all walls we don’t want to believe that it is worth the effort, the pain, of overcoming it. We look for any reason, any excuse, to give ourselves permission to simply not cross it.

I was reminded of the wall a lot the last couple of weeks. Having fought through the crisis weeks of my relapse relatively untouched by ‘existential fear’ – there was enough that was concrete to be afraid of, I find myself now in the recovery phase beset by a whole series of very dull, mundane, anxieties. In many ways the last couple of weeks have been the hardest so far. I have always been “good in a crisis” – I was blessed with a stubborn nature and an ability to control my fears when heavily pressed. In a crisis I am quick to identify ‘what needs to be done immediately’ and occupy my fears by getting on with it. But in more everyday situations, when the major threats have receded, I often find myself becoming stuck in a cycle of existential worrying and anxiety. The future suddenly looms large as ‘a long series of too many small problems’ rather than the somewhat easier to grapple with ‘either you will have one, or you won’t’. Being unable to do things the same way as before nips at the heels of my confidence, I struggle to make adaptations, my mind not wanting to entertain the idea that lots of s,all, often mind numbingly irritating or dull, changes need to be made.  Most destructively of all, doubt creeps in. Suddenly I am running away with myself – “I’ll never be the same again, I will not be able to do my job, my future will be a depressing series of losses until finally I am left with nothing.” Balancing on the edge of the abyss is thrilling, a challenge. Balancing on the edge of the slippery slope is just depressing.

But teaching that class I started to wonder if that was not simply my illness wall – the point I had to hang on through. I had my ‘entry to the field’ (the crisis) with all its unfamiliarity and novelty. I managed that pretty damn well, but then I am always happy chasing new experiences. Now though I am the anxious fieldworker beset with doubt and wishing that she could just walk away from the field. But as I try and tell my students, if I hang on there is gold ahead. If I can stay with it, stay present and observant, I will make a new sense of this, an unexpected sense of this, and that in turn will lead to new and unexpected things in my life. Suddenly that wall is no longer something to be afraid of, suddenly it is something to rush towards. So I capture this here, now, for the weeks, months, years ahead. To remind myself to stick with it. The wall may be a long time in the crossing, but cross it I will. And now, from feeling insecure and anxious and deflated I suddenly have a new feeling to add to the mix. The feeling that all experienced ethnographers get in the field when the wall looms. Excitement!


From Purity’s Drawers: Alcina, Handel, Endings and Beginnings

Well in the week after a birthday, as daily life resumes after a long hiatus, the mind turns to the passing of time and the changes it brings. I placed a gamble on the future recently and will resume my opera travels in January. It was with not a little hesitation I did, sadly I no longer trust myself to be able to overcome any obstacle to get to the opera. But having done it, the sight of the tickets in my desk fills me with delight and anticipation. Losing out on a much anticipated opera jaunt to Zurich in July all but broke my heart. Sharing the live experience of the music I love with the people I love is one of greatest joys of my life. I started this blog to help me through a crisis brought on by my MS, I ended another blog  because of a previous (though less traumatic) crisis. It feels good to know that things have changed and that I can write my way out of a rough period rather than have the rough period finish my writing. So for today’s delve into retired blogging alter ego Purity’s drawers, it seems fitting to remember her farewell some three years ago now (time flies).


Vienna, taken the night after we saw Alcina.

Vienna, taken the night after we saw Alcina.

This was to be Purity’s last post. Instead it is ‘mine’. This blog has always straddled a not so fine line between a conversation with myself, which I write, and a chat with the white shirt world, which Purity writes. I have intended for sometime to end it; life has entered a new phase, new challenges. The space and time to write like this (something I so enjoy, especially knowing that sometimes what I write is not just read but enjoyed by others) has been in ever shorter supply. Life demands me elsewhere for now.

Attending the Wiener Staatsoper Alcina seemed like a perfect moment to retire Purity to her ŵest wing library, feet being warmed by poor Mildred while she and Suzette polish off the last of the malt. But sometimes life throws up an experience too rich and deep and wonderful to be flippant. Love of women dressed as men in white shirts and singing beautiful music is of course a fine and honourable and apparently not solitary affectation. But all that is just a cover for what this blog is really all about. This blog is about how music, especially Handel, soothes and comforts, excites and delights one life; mine. And on Saturday night, in Vienna, I was reminded of that so powerfully I think I never will be able to express what it meant to me.

If this were not my last post, I would chatter in Purity style of the white shirt delights of the evening… of how incredible the erotic chemistry between Alcina and Ruggiero was, and the perfection of the two roll shirt sleeve, of the giggling exchange between Harteros and Kasarova at the end, and of the weirdness of seeing VK afterwards (yes folks I was dragged to the back stage door) looking like a supermodel in killer heels and little black number… But I am sure the wonderful An, with whom my Tender Smile and I shared a lovely post opera drink, will do a fantastic job of all the white shirt detail and more over at her place. And she is far better able to do that having seen it not once but thrice! But this is my last post, and that was too wonderful a night at the opera to not be completely honest with myself…

I found peace again this weekend. My lost inner voice, my fears over my health and future, have troubled me so much these last months. Despite all that I have in my life that is joy – my family and friends, a job I enjoy, a wonderful home – I have been ill at ease. I had made progress sure – finding new ways to connect with old pleasures despite the lack of an inner voice, looking more fully into the abyss and learning that it is not so scary in there really. But I have been troubled, and that was made manifest in a sudden inability to listen to Handel. Handel! My god. The backdrop to so much. Lost. Until Saturday night.

As I sat there in the audience waiting for it to begin, I was a little apprehensive. I had barely been able to listen to Handel for weeks, months even. Alcina is a long opera! Would I get bored? Would this kill Handel for me for ever? Well if nothing else Purity would enjoy the scenery I supposed. And “I” was sitting next to the woman who has filled heart with more love than it could ever have imagined possible. OK the opera may be a challenge but the night, the weekend, was special for all sorts of other reasons.

How silly! How silly to doubt Minkowski and Kasarova and Harteros. How silly to doubt Handel! Four hours later I emerged stunned, and alive, and fully at peace, feeling like only moments had passed. It started, fittingly, with Kasarova and mi lusinga. This was not music as sound, this was music as oxygen. My heart and lungs stopped, I was kept alive by this incredible performance. My throat filled with a sob I daren’t release. As the aria ended, well I wouldn’t have cared really, but oh god it was so wonderful to know I was not alone, for afterwards the audience clapped and clapped and clapped. No bravas. This was not the moment for that. Just long, long, long waves of clapping. All of us unable to quite let go of the moment, knowing that it would never happen again. This was it. We had shared it and now we had to let it go since like everything good in life, music is fleeting. But luckily for us there was so much more to come. Every performance was wonderful. Harteros – unbelievable. Cangemi knocked me off my seat with her beautiful piano singing especially, Hammerstrom, so rich and warm, and of course Kasarova. Dominating the stage, so unbelievably fully Ruggerio, acting better than I have ever seen her (thank you Mr Noble for letting us all see for a whole opera what we have seen here and there elsewhere).

As the night flew by, my soul comforted and cosseted, I found myself unable to stop the tears. This, I thought to myself, is why whatever forces animate the world invented music. As I sat in the top balcony that night, I felt exactly as I had done that morning in the arms of my love. And I suddenly realised that was what this was. It was love. Pure, simple, love. That she was there with me, that we shared this, only added to the perfection of the weekend. Not the opera, the weekend. That was what Alcina meant to me. A shared act of love in the middle of a perfect weekend. As we wandered throughout the city streets, sat for hour after hour in coffee houses, drank wine by candelight in a wonderful little Viennese cellar, all fears disappeared and the abyss seemed filled with light and the soothing sounds of love. I stood that night in the Staatsoper and cheered. For the wonderful performers and back stage folks who brought us such a perfect night. For Handel, who fills my life with such pleasure. For all of in us the audience for sharing so many moments of unrepeatable, unexplainable wonder.

But mostly my love I cheered, and wept and smiled, for you.

The End.

How Do You Want To Be When You Grow Up?

My first birth day...

Birthdays, at least at my age, always have a rather sombre core to them. When there is less ahead than behind it’s hard not to spend at least some of the day in reflective mode. As I parent, I often find my birthday occasions rather a lot of reflecting on my children as well. I try and recall being their age, I muse on how far from my dreams of the kind of parent I wanted to be I am. And after a year that saw me lose someone whose heart had mine, deal with the serious illness of my mother, and then my own, well this year was hardly going to pass un-mused!

These least few months have caused me to reflect deeply on the how part of “who I am”. It seems clearer than ever (to the point where I am astounded at my stupidity for not getting this earlier) that how we live defines who we are much more than anything else. But we are rarely encouraged to think about this. We ask our children “what do you want to be when you grow up?”, not “how do you want to be when you grown up?”.  As if simply by occupying one of societies pre-defined (work) roles we will somehow solve the mystery and challenge of life.

When we are kids with think instinctively of how – I remember nights sitting in my room watching the ice form on the window (ah, life before central heating) imagining me happy, me being creative, me overcoming some amazing obstacle. What was uppermost in my mind was how I would be – I would be brave, and adventurous, and creative. But people would constantly ask me what I would be, a question I rarely had an answer to (other than a kelp farmer living under the sea with a pet dolphin… Jacques Cousteau much influenced the younger me).

Such questions imply that what is not something that is intrinsically us but something we must turn into and that we need to look outside ourselves for approval not inside. By asking what we undermine our children’s sense of confidence and belief in self, we put the focus outside themselves – to be a what you have to be accepted as a what by others. Thereby we condemn our children, as we were condemned, to a life of seeking constant validation from others.

It was a sense of humour, creativity and stubbornness (in its positive aspects) that carried me through these weeks. Not my facilities as an ethnographer or a teacher or any of the other career roles I have occupied in my time.  Equally, stubbornness (in its negative aspects), difficulties with letting go, and fearfulness contributed to me being in this situation. So this birthday I am re-assured to know that how I am as a grown up is pretty ok, though with room for improvement. But mainly, I hope more than anything that my role in my children’s lives will help them on the path to understanding and clarity about how they want to be when they grow up, and to not get caught in the trap of defining themselves through pre-defined labels only others can grant them. As Langston Hughes said:


Hold fast to dreams
For if dreams die
Life is a broken-winged bird
That cannot fly.
Hold fast to dreams
For when dreams go
Life is a barren field
Frozen with snow.

The Opera World and Speaking Out About LGBT Freedom

1010874_486813428063058_1357257024_nOne of the things I love about academia is that despite the best attempts of creeping “managerialism” (awful word for a dreadful phenomenon) academia is still a place where people freely give of their opinions on anything and everything given half a chance. It may drive those around us crazy, but it’s one of the wonderful by-products of what can at times seem a frustrating career choice. However increasingly in communities of many kinds – work, faith, geographical, common interest – that is not the case. People seem more than ever, at least here in Scotland, to be afraid of voicing their opinions or engaging in debate. I grew up in such a world, where having opinions was called being mouthy and debates were called arguments. Luckily enough I seemed to have been born without an off switch or an ability to sense the pejorative when it is directed at me. But it could have been different, and I do know how hard it can be to break free from those constraints. So it was with great pleasure that I read the words of Joyce di Donato recently.

Those of you who know me may be surprised. I have often voiced my contempt of “celebrity culture” – I could care less what someone who happens to have access to the media thinks about anything. Her words did not impress me because she has anything new or special to say, or because she might be “speaking up for me” or “educating the public” or any of the other nonsense “people” (i.e. the media) ascribe to celebrities (i.e. those the media create in order to make money). No, what encourages me is the idea that here is further evidence of a debate within the opera world about something that world really ought to be seriously debating. Her letter of support for “us” is most important I think as words from someone in a community (the opera world) that ostensibly is as queer as it gets but all too often is (ironically) silent on the subject of freedom for the LGBT community. Especially as she reveals herself as someone who understands why we LGBTs in the West feel so particularly aggrieved by Russia. I am tiring of hearing “why get so excited about Russia it happens all over the place?”. Well yes, of course what’s happening there is not unusual, but it’s such a clear reminder of the spectrum of oppression that covers the world like some dreadful Rainbow from the dark side.

From the frequent small digs that I experience as an out UK lesbian and mother, to the torture and death that my LGBT brothers and sisters face in other countries, all of us in the worldwide LGBT community await freedom. Russia reminds us that the horrors of the extreme end of that spectrum are closer than we in the West might wish to believe. We have our violence – like most LGBT I have been both verbally and physically assaulted directly because I am a lesbian. We have our state sponsored discrimination – the legality of my connection to my children is still tenuous according to the law. We have our daily slights and asides. But the force of violence, the extremity of the oppression, erupting in Russia – the country that more than any other marks the boundary between the West and “everywhere else” – is terrifying.

That is why Russia is such a potent symbol for us. And why the vocalising of people like this, who are able and secure and safe enough to speak up, is important. Not because they are speaking to the public but because they are speaking to their own communities. As a “vested interest” outsider to that world – a devoted opera goer – it lifts my spirits to see that there is debate. It’s important because music and the Arts, like academia, are places that are meant to be hotbeds of debate and dissent. It’s important because so much music is about freeing us from oppression. It’s important because the opera community draws on the LGBT community heavily. We are a large part of the fan-base, we are a large part of the community itself. The public silence of the opera community does not unduly concern me, but to hear it speaking up does greatly encourage me. People like Malena Ernman and Joyce di Donato and no doubt many others I am unaware of, speaking to their community lift my spirits because I would hate to think that the affliction of silence in the face of injustice might be found in community whose work enhances my life so very much.

I know I will not live long enough to be able to go to a public square and gather with many others, as I did in Edinburgh the night Nelson Mandela was freed, and sing Freedom Come Ye All in celebration of the day true equality for LGBTs worldwide is reached. But I hope my children will. And I hope when they do, the opera world will be able to claim its part in that victory. In the meantime, knowing that a community I value so highly is at least engaged in the debate is an occasion for celebration. Joyce di Donato reminds me to say thank you to all – known and unknown – who keep the debate alive within the opera community. More than any other you know that silence is not an option.

In Glasgow Central Station They Knelt Down and Did Not Weep

Sorting out some of my mother’s papers reminded me of something I wrote a while back…

I was looking through some old family letters when suddenly on the radio came a beautiful Scottish folk song I hadn’t heard in ages – Hector the Hero. And since 2 and 2 sometimes make 5, the  interplay of these two things led me to remember a story my granny told…

My great uncle, her baby brother, had fought in World War One, in the trenches. He ran away from home, lied about his age, and joined up. A child soldier. He was barely there long enough to unpack his kit bag before he was injured, carted off the battleground (quite literally – hauled on to a cart by his mates), and sent home to Glasgow. His wounds weren’t too bad and being young he recovered quickly. Just as well as his mother was keen to give him a good leathering for being so daft. But not before a moment my granny told me of that has lived on as an image in my mind ever since – an image of the squalor of war and the redeeming power and beauty of love.

cenral station

Central Station in Glasgow is a large and imposing Victorian train station, from an era when women wore long skirts and men wore hats and children wore ‘the back of my hand’ if they weren’t careful. Gas light and steam train emissions conspired to keep the place in a permanent mist from which the giant sea monsters that were the steam trains of those days would emerge and into which they would disappear.

It was from one of these sea monsters that my uncle and hundreds of his fellow foolhardy, sweetly noble young men were disgorged that day. My granny and her mother had gone to the station to meet him. But, granny reported, there was no tearful clasping to breasts on the platform. No rushing into the arms of a mother or sister or wife for these men. Instead, they emerged from the train and the women folk would quietly drop to their knees in front of their returned, brutalised men. Kneeling there the women would light a candle and slowly, carefully, run the candle up and down every one of the (many, many) folds on the heavy woollen uniform kilts the soldiers wore. For these men were riddled with lice from the trenches, nowhere more so that in the warm, dark, lice friendly folds of their kilts. Quietly and without fuss they were brought back home, these men, and boys, by the gentle attention of mothers and sisters and wives. No tearful reunion, just simple attention to one of the basics; to be parasite free.

As my granny told me the story there was no grand emotion, just the recalling of her wonder at the sight of all those of women kneeling in front of their men on the platform of Glasgow Central Station. The candles cut through the mist in the station, illuminating the scenes of tender care all around her. The sound of thousands of lice clicking as they incinerated in all those flames was the only accompaniment to these acts of loving compassion.

It was a votive offering of quiet and simple love, the love that shows itself in the day to day attention to another human being’s needs. My family were not prone to outwards displays of affection. My great uncle was a quiet and gentle man, it never occurred to me growing up that he had seen war. My granny was a stoical woman, not someone one would naturally think of as much given to deep emotion. But he had, for he was part of it. And she was, for she was part of it.  That day in Central Station the healing began not with wailing and weeping, but with unconditional and unspoken love in the form of simplest, most basic, care.

My great uncle had no great ballad written for him, is commemorated in no great poems. But he was loved. He lived into his 90s. He lived and died surrounded by his ever expanding family. They wept the day he died.

Reaching into Pandora’s Box

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.

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Fieldnotes from the World of MS, White Shirts & Opera

Content At Large

Notes from the front: Content strategy, development and dissemination ideas from champions and leaders in the field


Debunking pseudo-neuroscience so you don't have to

What I did on my holidays

A week in Ireland. Alone

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