Skip to content

It’s Time to Take Account

One of the reasons I started blogging instead of writing on my Facebook page about my experience of an acute MS relapse is that I had so many people contacting me wanting to pass my thoughts on to others. At the time I started writing I was writing for me and me alone. It was how I made sense of a challenging time, it still is. But I became aware of a wider world of people my words were rippling out to. I don’t write this for anyone else, it is still just how I work it out. But I am more conscious of the impact on others sometimes. I wrote a post about a very low point (The Wrong Turn) a while back that generated a whole slew of private replies, it had stirred up some quite strong feelings in some people. I ended up writing a coda to it (On the Rocks Again) to try and reinforce that posts are not “the story” I am telling myself, they are merely snapshots of moments in a story that is still unfolding. Each snapshot must be read in that light. Telling myself this story as it unfolds has been hugely powerful and healing for me. But for somebody perhaps dipping in to a single snapshot the “story” is very skewed, and I have become very conscious of this regarding people with recently diagnosed MS in particular finding my words.

My last post was another such “difficult moment” snapshot and again it seems to have resonated with a few folks. I talked last time of the surprising emotional storm that being asked to undertake an annual performance review by my work had created. Having been quite upbeat for a couple of weeks as my physical condition began to  improve enormously and I started a phased return to work that seemed to be going well, I suddenly found myself back in the panicky, anxious, frightened, weepy place I had been for so much of the summer. Being asked to look back over a hard year, and into a future that still seems uncertain and frightening made me realise how vulnerable I still was, how tenuous my remission still feels.

When you are very ill your life becomes very present oriented. It’s one of the up-sides of illness – a chance to free yourself from the constant over-thinking of past and future that modern life seems so hell-bent on keeping us at. The prospect of having to go through this review plunged me back into that place. Quite a few people wrote expressing sympathy and worrying about me, and some talking of their own struggles to stay present in their lives. So I felt like I ought to snapshot my feelings now; having had the benefit of a couple of days to move past that initial panic and having started to unpick some useful threads in my reaction. I see that again I am over-thinking – that my reaction was not so much the fear of looking back or ahead (although those are there) but a rather simpler, more “present fear” in some ways. It just reminded me I am scared of having another relapse. And reminded me of the tension between staying healthy and staying employed. I have not managed that balance well in the past years. I do need to make major changes to how I live my life. Swept back into work it was easy to take my eyes of that very present need. I am not happy with how I manage my work-life balance. I have a pressing need to address this. Which will mean looking at some things in my past or future that I will find really hard to look at, let alone address. But I will have to make myself do it, just as my employer is making me address my past and future work performance.

Looking back over my blog I am reminded of how much I can survive. I see myself as I was then: challenged and sometimes struggling but overall, surviving. Being reflective and imagining my future (whether in the limited sense my employer wants or the wider sense that I know I need to do) will not be easy. But I will manage. Staying present, allowing myself to be scared or vulnerable, writing it out – all these got me through the summer. They will get me through this. At the time my boss told me of this I felt upset that I could be asked to go through this at such a vulnerable personal time, but I am finding a way to make it a positive experience, to make it part of the beginning of healing my “whole being” now that healing the physical part of my being is well underway.

We all have to account for ourselves sooner or later, and the completeness, the breadth and depth, of those accounts will dictate how powerful a force for positive change those accounts will be. Staying present does not mean avoiding the past and the future, but engaging with them only enough to be able to manage the present well. Our past and our future should inform, not drive, our present. For that to happen we do have to engage with them. It’s time to take account.

Surviving Remission: Living in the Present in a World that Lives in the Future, and the Past

As a person with multiple sclerosis that has been for the most part either benign (the early days) or secondary progressive (slow but steady progression of disability) I had until this year largely been spared the physical and emotional challenges of my fellow MSers who have what is called Relapsing – Remitting MS. Ever the iconoclast, I had to go and become that rather rarer beast – a secondary progressive with relapses. So rather late in my life with MS I am discovering the difficulties of dealing with a sudden very large increase in disease symptoms (relapse) followed by a partial recovery (remission).

The physical aspect at its peak was scary, very much so at times. I remember there was a moment when I suddenly felt like I was sliding down a hill and unable to stop. I’d never had that before. Our lives in contemporary Western societies are so much focussed on being independent, in charge, masters of our own destiny that giving up that illusion, accepting something was happening to my body I could not control, was challenging. But getting through that was easy compared with the emotional challenge of “surviving remission”. 

Being in remission for an MSer is of course hugely desirable. The sudden onset of new symptoms recedes, there may be some residual deficits but not anywhere nearly as intense as at the peak of the relapse. So it is with me. Time, rest, great support from clinicians, family and friends, and a great deal of physiotherapy have pushed back much of what previously left me hugely disabled and frightened. But…

I suddenly find myself, now that I am physically improved, an emotional wreck liable to sudden equally overwhelming attacks of fear and distress. I feel fine and then suddenly I am back there, sliding down that hill. Only this time it is in my mind not my reality. And as we all know the mind is a much scarier place. Oddly it’s not the physical remnants of that time that spark it. For example my throat still has occasional spasms if I get tired or have talked too much. Given that swallowing and breathing difficulties were by far and away the most distressing symptoms of my relapse you’d think they would be a great trigger for an emotional spiral. But no. It’s fine. They happen, and thanks to the fantastic speech and swallowing therapist I worked with at that time I have a clear understanding and mental model of what is happening. I know what’s going on and I have good techniques for controlling it. But sitting in the garden in the sunshine can spark it. A piece of music that was on the radio when I was unwell will do it. So many things can send a shiver of anxiety down my spine (if only my actual nerve signals could travel as smoothly down my spinal cord!).

Today, on discovering that I will have to undergo the annual performance appraisal at work I missed as I was off sick, I had a major spiral. My mind almost shut down at the idea of having to look back at a year I would give anything to forget so filled with death and illness and distress was it. I tensed up in the meeting it was raised in, but when I got home and opened up the paperwork it hit me fully. Blunt force trauma to the deep dark recesses of the soul. Tears welled in my eyes as I contemplated the form’s request to state my plans for the year ahead. Will I have a year ahead? What will I be able to achieve?  I’ve been working so hard to cope by living as fully as I can in the present that I forgot the world of work does not think like that. Suddenly my mind races again – can I cope with work really, what happens if I have a relapse like that again, will I ever feel like me again, is my career over? Can I cope? Can I cope?

As the panic swirls around I realise that just as when during the centre of the relapse storm I had a moment of clarity about the real challenge of life (it’s simply to keep breathing!) this panic is not really about work. It’s just that I am afraid of another relapse. So finally I join all the hundreds of thousands of other MSers who live with relapsing-remitting MS. I am lucky that I have had twenty years without this drama, just a mundane chipping away at abilities, slow enough to be largely absorbed into my psyche. Now I must live with the shadow of relapse and the challenge of surviving remission emotionally intact. I will of course. But I think I need a way to balance living in the present with looking into the messy swirl of the future. WB Yeats never seemed more apposite:

I know that I shall meet my fate
Somewhere among the clouds above;
Those that I fight I do not hate,
Those that I guard I do not love;
My country is Kiltartan Cross,
My countrymen Kiltartan’s poor,
No likely end could bring them loss
Or leave them happier than before.
Nor law, nor duty bade me fight,
Nor public men, nor cheering crowds,
A lonely impulse of delight
Drove to this tumult in the clouds;
I balanced all, brought all to mind,
The years to come seemed waste of breath,
A waste of breath the years behind
In balance with this life, this death.

Social Media and Audience Building for Classical Music and Opera

It’s been a bit depressing of late to see so many singers and musicians who ran charming, rather eccentric Facebook pages going over to the professional social media presence management thing. Of course, I know people are busy and social media can be a real time sink, but I think it’s quite a misreading of how to manage one’s social media identity in the world of classical music and opera. Professional presence management of a blog, sure – great! Especially if you can keep the schedule information up to date – a lot of the audience make holiday and travel arrangements around performances so good up to date scheduling information is critical. But FB and Twitter are about being there yourself, connecting with fans to build community around your music, not simply promoting oneself.

Ultimately in small performing arts worlds like opera and classical music that is what will sustain the majority of careers because in creating that community you help the audience learn and grow with you. This is particularly important since as studies repeatedly show the people who build the audience for classical music and opera are not musicians but the fans, the audience. Getting a new audience member through the concert hall door is the easy bit, the tough bit is what Bezencry calls “the nurture stage”, and Brown calls “getting past first date”. That stage relies heavily on the existing core audience bringing the new audience member into the fold.

Social media management is great for getting information out there but it’s dreadful for helping build real community. People like Cecilia Bartoli and Anna Netrebko for example are known primarily to their audience as carefully stage managed ciphers of themselves filtered through their PR firms. This might be OK for a singer at that level of mass audience – a good chunk of that audience is buying into the brand not the musician. But for those new on the scene, or with smaller audiences, or in more niche areas of the business, this is a dangerous ploy. You exist in the audience’s mind as a product, not a person with a passion for music and for communicating that passion, for sharing it. Even for the mass appeal singer, there are dangers with outsourcing your identity to others – as Netrebko found in the recent furore around Russia and its anti-gay laws. When things like that blow up, how do you get the audience to believe it is you talking now and not your PR folks? Alternatively, the professional social media flunkies may lure you into rather costly and ill advised “experiments” with the medium – I’m thinking of the “playful” (i.e. naff) interactive narratives that were used to promote Bartoli’s Sacrificium CD recently.

Fortunately there are still great role models around, like Ann Hallenberg and Holger Schmitt-Hallenberg. They have built a large, dynamic, vibrant community of Baroque music lovers around their FB pages, a community that educates each other, enthuses each other, and passes around info about upcoming releases/productions etc. No bland ‘clearly written by a flunky’ posts, no third person speak, no air brushed beyond belief “head shots”, just lots of great insights into the music and generous sharing of views and ideas. Perhaps those going over to the sterile professional social media world believe that they can’t post enough, that it is too time consuming. But as Ann and Holger, demonstrate it is not the quantity, but the quality and the authenticity that matters. There are problems of course – managing the inevitable trolls and policing the boundaries between private life and professional life in particular. But the benefits I believe are worth the effort to manage those issues – at the end of the day what the Internet does that is so amazing for classical music and opera is that allows the audience to find each other. In that one act, the sustainability of that audience is significantly improved. In a challenging era for all the performing arts, that surely is a good thing!

References

Benzecry, C. E. (2000). Becoming a Fan: On the Seductions of Opera in Qualitative Sociology, 32, pp131 – 151.

Baker, T. (no date) A guide to developing audiences for classical music. Association of British Orchestras. available from: http://culturehive.co.uk/wp-content/uploads/2013/04/Stop-Reinventing-the-Wheel-Guide-to-Classical-Music-Audiences.pdf (Last Checked October 3rd 2013)

Towanda's Window

Fangirling Is Resistance

Lou's Story

Our journey with cancer

Vanessa's War

The wartime memoirs of Lady Vanessa Montague

Equality by lot

The blog of the Kleroterians

Citizen Participation Network

Connecting Research, Policy and Practice on Participatory Democracy

The Eyes Have It

an appreciation

drkategranger

In memory of an inspiring young doctor who mused about life & death through her terminal cancer illness

criticaldispatches.com/

Follow me on Twitter and Instagram @RichyDispatch

opera, innit?

a good Tito/mezzo guide

atrophiedmind

140 characters aren't enough for this stuff...

Bullet Proof Cardie

A doctor in recovery writes...........

Leisurely Seeking Doctorate

A fifty-something American explores doing a PhD in the UK — and then turns 60 and does it

@katetowsey

Content Strategy - Delivery - User Research

Swimming in Stormy Weather

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

NeuroBollocks

Debunking pseudo-neuroscience so you don't have to

What I did on my holidays

A week in Ireland. Alone

Bella Caledonia

it's time to get above ourselves

%d bloggers like this: