One of the most distinct experiences of having MS for me, is looking young but often feeling old. Energy has to be sparingly used, limits considered. At some point over the last twentyfour months regular old stairs became ‘Stairs!’, something to be negotiated in trepidation, sitting down became a favoured activity and careful planning is required to burn the candle at one end, let alone two. When my grandma mentions difficulties with egress from cars and showers, I find myself nodding in agreement. These kind of considerations usually take decades to come in to play as people gradually age, but for me they have abruptly arrived over the course of two and a half years. And all of this, despite looking reasonably fit, young and healthy to the undiscerning eye. Body 32, brain and central nervous system going on 72.
Of course the metamorphosing result of all these day-to-day adjustments and the thunderous diagnosis of MS, is the realisation that my body, my life, is finite. It’s an old adage but grasping one’s own mortality often only hits home as a result of a shattering personal loss or a heavy diagnosis. Academic, Guardian writer and recently diagnosed MSer Peter Thompson wrote of his diagnosis: ‘I had always known that I was going to die, but now I knew I was going to die and there is a real difference between those two things.’ As I’ve written before, all disease humbles: a stark reminder you’re just flesh and blood. When your disease is chronic and degenerative, this reminder is an enduring admonition. Volition can only go so far. This is a hard pill to swallow when you’ve lived way under half the average lifespan for a woman in the UK.
This and the reduced life expectancy that accompanies MS, has revolutionised my perspective on age. Now the elderly seem to me to be in an enviable rather than a pitiable position; triumphant survivors, unassailable bastions of good fortune and relative health.
People’s assumptions of wellbeing when they see youth have been at the root of much of the ‘why me’ anger I’ve felt in the last year or so; the disjuncture between how I am feeling and what strangers see.
But what I find really troubling is blinkered attitudes to age and aging. Of course these abound in our youth obsessed culture and often mean that people take on negative attitudes to their own aging. It is a shame that in advanced years, we tend not to celebrate people ‘making it’. Especially with women’s ageing the focus is too often is on the skin deep consequences of growing older, when really it’s what’s on the inside that counts.
The recognition of the value of life is, I suppose, one of the much celebrated upsides of living with MS. The realising what you’ve got, living life fully awake and aware and making the most of every second; licking the honey.
For me, a large part of dealing with my diagnosis, seems to be about the disjuncture between the inside and the outside. The journey began the moment the neurologist showed me the inside of myself, my brain on an MRI scan. It was then I was unequivocally faced with my corporeality and its inherent fallibility. I walked out of the hospital looking the same, young and healthy, on the outside. But the world had turned inside out and I knew on the inside it was a different story.
Copyright (c) Cathy John 2012. All rights reserved