The Great Escape

On the surface, I try to keep my emotions in check, maybe even slightly suppressed, well, most of the time….. I have always been a glass half full kinda’ gal; the default emotions are set to positive. I guess most of this is down to coming from ‘strong stock’, but I think a bit of it comes down to brain training too. I made a decision shortly after my diagnosis of MND/ALS: It was either sink or swim, I opted for the latter. What makes this possible are the boulders of support, propping me up from every angle: Physically, mentally and emotionally. I was not only born from ‘strong stock’, I married into it too! Fortunately I am not alone in this nightmare.

But under this veil of so-called strength there lies a chasm of sadness, fear, grief, heartache, loss, frustration, anger… It only takes a scratch on the surface for the whole veil of strength to come crashing down, releasing all the negative emotions. Sometimes I think to myself, “Fuck!”, how have I managed to get this far, living with MND? The answer is that I take one day at a time. This is how I cope.

I avoid my reflection: I am hiding, not wanting to recognise myself in a severely disabled state. If I close my eyes and concentrate on just my breathing I still remember the old me. My favourite escape is when lying in bed, in the early morning, just when the dawn chorus is warming up and the early light throws a soft glow at the top of the curtains. I am in a semi conscious state of slumber, not knowing what’s real and what’s not; this is the sacred time I get to escape from MND. I start planning something to do that day; a walk on the beach – yes definitely, the dog hasn’t been out in a few days and my son loves beach-combing. Maybe we could eat out tonight…Yes, good idea. Now, where to go?… As my brain starts to awaken, my thoughts go in a different direction. I stop them going there. No, nothing is wrong, it was all a bad dream. I try to move my arms; I am fully awake now, in my living nightmare. My escape was brief.

MND has been the greatest challenge life has thrown at me, my husband and my family. It has changed everything. Despite this, we keep going, life still goes on. The human spirit is incredibly strong. As someone wise once said: “You don’t realise how strong you are, until being strong is the only option you have.” Fuck you, MND – I will live to fight another day!

Sharon x

 

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Author: Sharon Friel

In 2012 at the age of 38, I was diagnosed with Motor Neurone Disease/ALS. A death sentence with an expected term of 1,000 days; I've since bypassed my expiry date. Although paralyzed from the shoulders down and voiceless, I am still here, still living my life. Wife, mother, daughter and sister; family is what makes this all bearable. Before MND hijacked my life, I was CEO/Manager of a Credit Union and loved exploring the outdoors - cycling, walking and kayaking.

5 thoughts on “The Great Escape”

  1. You say you are propped up by boulders . Yes, you are.
    Your family are amazing .
    But at the kernel is you Sharon,
    It takes boulders to prop you up, because you are such an immense force yourself.
    Love you pretty lady
    Great blog

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  2. Sharon you are the strongest lady I have ever know and you write so eloquently and with such passion… Your blog is such a inspiration so keep up the good work and FUCK MND!! Xx

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  3. Hi Sharon, I had a lovely chat with your mam recently. She told me about your blog – I’ve loved reading it and thank you for sharing. I’ll be honest I’ve had a good cry reading every single blog. Today reading of how you cope was exceptionally inspiring and I did find myself escaping to that beach and watching a young boy beach combing!! You are an amazing lady and I totally agree you are from “Strong Stock”
    F$€k MND – love Adrienne & Robby xx

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  4. Sharon – thank you for sharing such personal and difficult moments in the dreadful journey you are on. I haven’t had the privilege of meeting you, but feel as though I know you, as I have been a Winchester friend of Lisa Jane’s for many years so have heard much about you both before and after the monster arrived in your world.

    You are an incredible woman and you write beautifully and poignantly. Please share your words as widely as you can, as they go along way to helping those of us who have not had the misfortune of encountering the monster firsthand, understand just what MND and how it affects those it touches.

    You have been robbed of so much, yet you demonstrate a strength and determination that humbles many of us. I salute you and I look forward to reading all your future posts if you choose to share them.

    Jules Xxx

    Like

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