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Skin Deep

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

6 comments to Skin Deep

  • David Optholt

    Thanks so much Cathy for articlating on MS and putting into a real life perspective. Your blogs are something I really look forward to.

  • April Culley

    Cathy- I recently found your blog, and as a 2 and a half year survivor myself, I find your blogs inspiring and validating. As a fellow professional, ambitious 30 year old woman who had to move in with my parents, I just wanted to say- you’re not alone, and thank you for putting your story out there, awareness is the first hurdle!

  • Martin Craig

    I often walk slowly with a stoop – I reckon much of it is in my head, I tell myself, “stand up straight and walk quickly like you used to”. It often works – to a point. There’s an old man lives near me, who I presume has Parkinson’s. I often see him walking to Sainsbury’s, my place of horror, wearing a smile. He’s an inspiration to me. He’s old ‘and’ infirm, but he doesn’t seem deterred by either. I know this MS stuff is forever, but everyone has to work with what they have, but maybe they have more than they realise.

  • I’ve just heard your input on the Radio 4 programme ‘Coming Out’. I was diagnosed with MS in May after six or seven years of tests, symptoms and attacks. There was always an uncertainty with me because I only have signs of de-myelination in my spinal cord, not in my brain, so part of me still feels like an imposter. Saying that, I don’t go for very long without any issues. At the moment I have been having bladder problems since February.

    I haven’t ‘come out’ properly. My employer doesn’t know, just my parents, husband, and his parents. My mum is in denial and my parents in law seem to think I’m going to keel over any second, so it’s quite bad enough at the moment. How do you tell people without them either thinking the absolute worst or wondering what on Earth you’re talking about – after all, you look ‘fine’?

  • Krissa Sheppard

    Thank you Cathy. Sometimes I forget that I’m not alone. It seems that I am becoming closer to those that have MS and watching family and friends slip farther away because I can’t explain the things I am feeling. It’s extremely sad and hurtful when the people you love so much just “don’t get it”. Some days I just don’t want to “suck it up”. Some days a good cry with your parents or siblings is what I need. Sadly, family can be the most critical.

  • Hi Cathy,
    A beautifully written post that really resonates with me. And like Krissa says, I too am finding myself getting closer to my ‘MS friends’ and slipping further away from my ‘before MS’ friends.
    Take care x

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