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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Diagnosed beyond repair

On the 23rd August 2012 my life changed forever: I was diagnosed with Motor Neurone Disease [MND/ALS]. There it was, a death sentence; my death sentence. MND took ownership of me that day. It wasn’t only me that was dealt a blow that fateful day. My husband and son lost the promise of a happy future, my parents and sisters lost a cornerstone of the past. I will never forget that drive home from the hospital, the eerie presence of bad news hung over us. My husband turned to me and asked, “do you want to be with your family?”. I nodded yes. We drove up to my parents’ house. My mother was carrying clothes out to the line. She didn’t look over to smile and wave like she usually would. If we had beeped and waved over, that was a signal that everything was ok, but we didn’t. She kept her head down, avoiding the inevitable bad news, clinging on to normality for just a moment more. We met my dad in the kitchen, he had a look on his face that I didn’t recognize, he was studying my demeanour for an indication of the verdict. I remember sobbing in his arms – my dad could fix anything but we all knew I was diagnosed beyond repair.

To understand the medical effects of MND on the body, that’s easily found online. But I want you to understand more than that, I want to tell you how it affects me, without the medical jargon. MND is relentless – once it arrives it is with you forever and no matter how good a fight you put up MND always wins. For me, its arrival was subtle but within months it was in plain sight. Chipping away, slow and steady, the MND monster unleashed inside me, free to destroy everything.

It started its initial destruction in my legs and when they could no longer hold me up it moved onto my hands and arms. I was able to study the muscle wasting closer this round, watching my hands slowly lose shape. Not satisfied with destroying my limbs, the monster, as subtle and sneaky as ever, went for the big one, my speech, my voice; the essence of me.

Motor Neurone Disease is known as the 1,000 day disease because most patients die within this timeframe. I’m approximately 1,300 days living with it and although I am effectively paralysed from the shoulders down, I still feel I’ve got some fight left in me yet!

Sharon x

Debut blog post

I have decided to start blogging for a couple of reasons. Many people are curious about how I cope, what I do with my day and what it’s like to live as a disabled person. It’s not all doom and gloom, although it’s not a bed of roses either. I guess I want people to learn that despite having MND/ALS, I still get joy and meaning out of life.

I hate, hate, hate pity. Got that? So this is not a vehicle for a ‘pity party’, ok?! I envisage this blog to be a honest and wry insight into a world from the perspective of a recently disabled person. I never had any friends or family with a physical disability, so I had really never thought about it before. I now experience life from a completely different angle and, boy oh boy, I have learnt so much about people – good and bad. This is what I am most excited about sharing with you and I promise to give you a few laughs along the way.

Sharon x