Poker Face

I’ve acquired all these useless talents since having MND/ALS. I can sit in the same position and not move for an entire day. I can talk without moving my lips. I can turn on the TV with my eyes. And I have a poker face any gambler would give their right arm for!

When I first learnt I had a muscle-wasting disease, I focused my frantic worries on the muscles within my limbs. Nearly five years down the road, my worries are centered around losing muscles so critical and vital, they are literally holding me together.

Most of my voluntary muscles that I control, have withered away by now and weirdly I’ve become used to their inert state. Every now and again an involuntary muscle which I have no control over, surprises me and makes my arm or leg move, usually because of a twitch. I enjoy the sensation and admire their commitment for still hanging in there and doing their bit. My MND mustn’t think they’re worthy of its attention or maybe the monster underestimated their importance, just like I had.

The monster is currently focused on the destruction of my face and neck muscles. Without support, my head feels heavy as I try to balance it and when I’m tired it acts like a dashboard figurine on a bumpy road.

The muscles on my face are a trickier problem. There’s no way to support them, they just hang, looking sad and tired. They no longer reflect my true feelings on command. Interestingly enough, the involuntary muscles allow me a few reactionary expressions. Happy and sad are the main two. Then I’ve my ‘sucking lemons face’ when I eat something I don’t like and my ‘wtf?!’ face when someone does something I don’t want or like. Unfortunately my husband, mother and carers witness this one occasionally – sorry guys. Then there’s my bold face when I’m trying to make a smart comment or tell a joke; I sport a goofy grin and can’t stop chuckling to myself as I type it up on my Eye Gaze.

All these expressions are controlled by involuntary muscles, they reflect what I’m feeling at that particular time. They’re flash reactions as I can’t maintain them for long so I like to think of them as ‘real’ reactions; from the heart and not from the head. If I’m happy or sad, I can generally hold those a little longer. For photos, I need a jester behind the camera to help me hold a smile. But if I’m in a ‘meh’ mood then my poker face is what you’ll see, it’s the default expression; blank, motionless and expressionless.

Without facial expressions people are impossible to interpret. During a conversation with me, it’s easy to misread my blank face as disinterested. Non-verbal cues like nodding yes and no are beyond my capabilities too. And if I start typing a reaction on my Eye Gaze, it appears I’m not listening so the conversation pauses… it can be very confusing as the conversation stops and starts. Unless you’re used to chatting with me regularly it’s hard-going. I like to give visitors advance notice of my poker face, removing any confusion from the get-go.

An unexpected fringe benefit of having lifeless muscles on my face; the wrinkles aren’t so obvious, MND is doing the same job as Botox! Who’d have thought there was a silver lining wrapped up in this one 😉

Sharon x

For Margaret F, who always wore a kind and beautiful smile.

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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