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!