It is some minutes past midnight and I still acknowledge that I made a promise to Sharon to send in a piece however as is the case with writing, there is so much to say and the question is where does one start from?
Three years ago, the term dystonia was unknown to me and just like every individual, we are defined by our purpose and usually we spend most of our lives in pursuit of our purpose because to every life, there is a purpose and irrespective of what life throws at you (and yes sometimes, it includes even the kitchen sink) our ability to choose to persist as us is still ours to make. We are who we choose to be because what defines us as individuals is not the physical but the spiritual. There is indeed more to life than meets the eyes and just like the characters of a staged play, we should endeavour to make it our best performance whilst we are on stage – we have just one shot at it.
From being an independent self-reliant person, it has been a ferris wheel of a ride, to being finally told those scary words “this is a rare case of a rare neurological disorder” which has translated into having to be dependent on every other person for some form of assistance in executing even the slightest task. True, there have been moments of sheer despondency and anxiety however through it all, I have chosen to see my unique position as being just that….unique.
Myoclonus dystonia! That is the medical condition supposedly affecting at least 3,000 residents in the UK. Research is extensively on going with regards to knowing more and thus being able to proffer a lasting cure however till then we have to live with it but are we to allow it determine who we are? The answer is an emphatic NO. Only you have the power to change your own life and the question boils down to the choices we make. When life plagues you unexplainably, the choice is yours to settle down in the bog or pick yourself and press on….and when your strength becomes weary, look up and realise that life is filled with the memories and tales of those who overcame.
I will be commencing my botox shots in the coming weeks and whether it alleviates or aggravates, I have already made my choice – my life is a purpose driven one and faith is what keeps it going. Faith in God, faith that He is aware and He has got my back and that whatever circumstances may come my way, there is some joy to be derived from them even if it is in the midst of a wonderful support group or when am all alone coping with the pains and the tremors. A life well lived is not determined by the wealth garnered but in the number of lives that you encountered and left a smile and a message of hope with them, and that is the choice I have made.
I will be signing out here and will share more of my story in coming weeks for us to realise that a life without trying seasons and moments is a life devoid of essence for it is in dying that we learn more of life, it is in weakness that we learn more of strength and it is choosing that we determine the pathways we walk.