One of the hardest things to deal with when coping with MS is the constant fear of deterioration that hangs above at all hours of the day and night (especially night). They are inchoate fears: some concerned with physical decline; some with mental losses and some with the impact these will have on relationships.
When I was diagnosed with cancer in January 2018, the fear of my imminent demise was added (or at least a slow and painful one in the future). If the MS diagnosis had felt like a death sentence, this was one that brought my execution date forward by several years.
Everything I had felt and was dealing with up to this point was magnified ten-fold and all the work I had done to cope was suddenly stretched to breaking point. I was delighted that I had the practice of yoga and meditation in place, but I was not sure that it was enough to manage this.
Intimations of mortality
We all know that we will die and accept, to some degree, our mortality. When it gets up close and personal; however, most of us tend to wobble a bit. In my case, my coping strategy was not so much to resolve my fear of dying, but to embrace it. In some ways the pressure of this fear was just too much and I dealt with it by imagining, at some level, that I was already dead. No, I did not build a coffin and climb in – though I did something similar psychologically.
I became someone who observed life, enjoyed much of it, although I didn’t really think of it as real. The Buddhist idea of life being a dream made absolute sense and I deliberately chose to sleep-walk through it. (Most people sleep-walk too, yet, they are not conscious of the choice.) If life isn’t real, my faulty reasoning went, then it cannot hurt me. I can disengage from relationships and avoid the pain of losing those I love.
My diagnosis gave me a 75% survival rate increasing to 80% with all sorts of revolting therapies. This sounds good until you turn it into rations. A 3:4 or 4:5 isn’t bad. A one in four or five chance of dying isn’t great either.
So, I had to get my head around this. Six months of intense treatments followed: surgery, chemotherapy and lastly radiotherapy. The chemotherapy part was so revolting that I told my husband that I would never go through it again under any circumstances.
After all this, I would just have to wait and see if it worked. My MS was blessedly inactive. Having a very compromised immune system is a great way to keep MS in check. Mine was barely functioning.
Salvation
Salvation came, strangely enough, in a novel. It was a good if not great one (The Immortalists). The twin themes were that you cannot live your life in fear. Doing so is likely to make that fear come true. (Think of the advice to never look at a tree when skiing, or you will probably plough into it.) The second was the old chestnut, so easily said, but so hard to follow, that life must be lived in the present without concern for the future or compromised by the past.
In my ‘Eureka!’ moment, I realised that rather than ‘playing dead’, I should play at living. If time is short, then I should suck the very marrow out of life while I can. To do this, I need to be fearless. If I die tomorrow, next year, or in a decade, it doesn’t really matter. What matters is that I live now.
I also came to the slightly scary realisation that my negative attitude might actually be contributing to my demise. In a sort of reverse placebo effect, my belief that life was effectively over, might well make this happen.
My MS had begun to make itself apparent at a period of extreme distress in my life. At times, life felt an unbearable burden, and perhaps my body took this as an instruction to dismantle itself. My cancer occurred after a year of anxiety caused by the possibility that my nephew, my mother and my husband might have the disease. The irony, of course, is that the only person who did have cancer was me. All the stress cannot have helped me. Nor did it in anyway benefit anyone else.
A change of perspective
Despite the fact that I will never be well, I can attempt to live well. I have revised the hope that I will live to see my granddaughter reach five to seeing her graduation and even marriage. And why not? If this is not possible, it’s not, but why deprive myself of the pleasure of anticipation?
This was really what the Buddha was about (I think) when saying life was a dream. We are caught up so completely in our perception of life that we forget that it is only that – our perception and not the reality.
It is time to stop fighting the shadows and step into the light. The shadows will always be there, but if we face the sun, they will fall behind us.
