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The tale continues

Ah time, in the digital age you have become so much more fluid a concept. Our digital past pops up to haunt us regularly: a friend posts a picture you are in of an event long past, a dead loved one pops up inviting you to join them on some social network, or, as today, a post you wrote on Facebook two years ago comes back to you unbidden. Sometimes the algorithm gets it just right – what you read is what you needed to remember. For those moments you find yourself listening to yourself of two years ago wrestle with what it turned out would shape more than anything else your here and now. Two years ago I took a little leap and posted something deeply personal on Facebook – I was in the steroid induced recovery from a serious MS relapse. The combination of that relapse and the joy of the (albeit fleeting) steroid high that had pulled me out of it had clearly got my mind racing. And I wanted to write it out of my head and into the world. So I did. 

As I reread those words, cast back up out of the digital soup, as I listen to myself of two years ago, I was struck by how simple that time was. Life’s “complications” had been swept aside in the rather simpler need to focus on survival and recovery. But with that came a new awareness. The future became something that demanded change – more attention to what I did with my precious time and why. That experience left me physically weakened but emotionally immeasurably strengthened. It would be trite to say “what doesn’t kill you makes you stronger” because of course it doesn’t really, or at least it doesn’t completely. I did change, life did change (dramatically) after that. I became clearer about a lot of things, stronger about what I would and would not put up with. But I also became physically more challenged. And where once had been a sense of dread induced generalised anxiety of what might be, now there was a more forceful, present, focussed sense of danger and fear. Less fear of the physical and cognitive impacts of my MS but more fear of making poor choices about how I spend my increasingly limited time and energy. It also left me a much better listener (including knowing when to stop listening from time to time). 

There is so much to llisten to every day. We can listen to our bodies as well as our thoughts, the voice in our head as well as the voices out there. But how do we know what to listen to first? How do we listen for what we didn’t know was there? And how do we know when it is time to not listen? An illness like MS challenges us to listen extra hard to our bodies, we ignore its cries and whispers at our peril. My body is usually pretty good at telling me it’s time to slow down, or to stop. It aches, spasms, stiffens. It trips my feet and my speech, slows my walking and my mind. But to always listen to it is depressing and disempowering. To be the slave of a body and brain that are slowly failing leaves one feeling little more than the plaything of some cosmic joke. Can’t I be the master too sometimes? Don’t we all need sometimes to push at the edges of what is good for us?  

These last months have gifted me a precious opportunity to feel a hugely empowering sense of “spending time and energy wisely”, well at least as regards work. I don’t think it is pride or obstinacy alone (though yes of course that a bit)  that encourages me to dance at the edge of what my MS permits. Haven’t we all looked up, or ahead, and wondered what if? Could I? Is there more of me and this than I know? So I choose when to listen and when to ignore, deciding as my mood takes me. I try to be a good “MSer”, most of the time. But now and again I need to push back, need to cover my ears and let the fates determine how much I have to pay for my deafness. Sometimes life just gifts you an opportunity to be in the right place at the right time, but with MS that right place and time may not be accompanied by the perfect physical capacity to fully exploit the opportunity. But enough, and the right ability to work around the lacks, might be all I need. At least I hope it is. 

Two years ago I looked up from that terrible experience and found much in how I spent my time and energies wanting. I knew change was needed but not how to effect it or what it would bring. Today a new week starts in a job that was the result of those eventual changes. A job I find fulfilling and challenging, and though like any job it has its frustrations and I my failings, I know it is a use of my time and energy I do not feel misgivings about. I am in the right time and the right place, perhaps not as perfectly able as I would wish to be, but as good as I need to be. I have felt frustrated recently at the limitations of MS, angry on the days when I want more from this body than it can give. But I listened then and I am still listening, for as I wrote two years ago:

Perhaps I am writing this here so that someone who needs it (or knows someone who needs it) might find it, and be reassured just a little. Or perhaps I just need to share it for me, so that I don’t have to pretend it didn’t happen. So much energy gets wasted that way. We exhaust ourself projecting and protecting what think of as ourselves – but which is in fact a carefully constructed image (or rather a number of them). When we are young we have much energy and we can devote large amounts of it to the careful construction of these images. But as we age or face major challenges then the cost of that becomes enormous; an emotional and physical drain quite counter productive to the urge that inspires our image making – the urge to be happy. We make ourselves miserable, we confuse, or irritate, offend or sometimes scare those around us. All in the name of happiness. But today I am reminded of what happiness really is, and therefore who (if anyone) reads this, and what they make of it, is not uppermost in my mind. There are a small number I know will read, and I know this is the only way I can effectively really share where I have been with them. But equally, in part it just pleases me to be able to do it. I like to write, it’s one of the few things I still feel confident I can do well. So I am writing this because I can and because I need to; the nuances of my motivations are less important than those facts. And with that, begins the tale…

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