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.