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.