Seated comfortably in the cozy reception of the Chelsea Consulting Rooms, I resist the urge to make my way slowly but steadily to the park and just lay my weary body down. Had another nice session with my pain physiotherapist and with three appointments scheduled for today, it’s one down and two to go. What better way to spend the moments in between than to chronicle my thoughts about my continued battle with FMD, generalised or myoclonus dystonia – many names to this elusive foe that continues to elude the best of experts and yet cunningly ceaselessly pummels our bodies. Each day, gratefully received with thanksgiving and an undeterred view to conquering and triumphing regardless of the shortcomings of medical science.
Over the last week, I have encountered a crop of unique individuals who unknowingly have given me something new to hold onto whilst contemplating the old and the present. Boisterous Dee who has been a friend from outta the blues but from same origins, a triple feathered hat adorning her beautiful crown and an amazing personality – not battling alongside many of us but she still stands out. Roxy who has shown such feistiness in her own battle, determined not to give into the apprehensive future unknowingly created by many medical experts and a worthy ally in this fight. Pam who has doggedly continued in the paths of her parents, not focussing on her struggles with this foe but determining to change the world one person at a time. Debbie and Jamil, empathetic and yet cheering me on in this battle, the list goes on…….You may now understand how special this past week has been.
“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.” Harvey Fierstein can’t have put my stance more aptly. Dealing within the last few days with a tumultuous aftermath of a wonderful barbecue, working past a severe bout of sciatica and intense aggravating pain, watching bemusingly as my fore finger insists on differentiating itself from the rest of my fingers…..the list goes on and on. This battle goes on, each day defining itself by the little steps of successes achieved despite the irritating restraints occasioned by a neurological system wanting to be independent, I refuse to be bullied into silence neither will I become a victim because “when I stand before God at the end of my life, I would hope that I would not have a single bit of talent left and could say, ‘I used everything you gave me’.”- E. Bombeck
One thing stands clear even with my wonderful team of consultants, each adopting an approach that’s most comfortable with them, this is a personal battle and there can only be one victor……Me. Regardless of the diverse approaches, there is a limit to the extents to which we can unravel the mysteries of the human body and its complex systems. What lies behind the shroud concealing the answers to our numerous unanswered questions will definitely be unimaginable and whilst we yet struggle with our puny attempts to understand, time passes on and the question we should ask is how best can we make use of this inevitably scarce resource called time. Continue to be fazed and depressed when individuals like us can’t provide the answers we seek or channel our time and talent towards improving the life of just that one person at a time. My choice has been made, there will be no white flag across my door. I will stay in the trenches until I’m out of ammunition and even when I have run out, I choose to lift my eyes up and exploit the inexhaustible supplies available to each of us.
This is yet another clarion call to my friends and fellow warriors, as long as breath remains, there is yet work to be done. Remember that the best way to triumph over your weaknesses and frailties is to assist another with theirs and even when the attempt is rebuffed, be glad you made the effort because in the effort lies victory. The bills may be overwhelming, the pain a constant nuisance but acknowledge that there’s a reason for every season and whilst we may yet not comprehend the reason, acknowledge it is a season and plug in those talents – each of us complete with a unique set…….for what a tale of misery and woe if we choose to allow those talents to waste because it is better to wear out than to rust.
I have to dash (not literally) across for my next appointment but I will remain valiant because that is my choice. Nothing is going to brow beat me into forced submission, my voice will be heard not in tales of woes and misery (the world is sad enough) but in a tale of triumphant victory that despite it all, I conquered and triumphed. Many will come across my path as I will, across many and knowing fully well that in life, we meet to part and part to meet, I want to make those brief moments count. It has never been about the numbers and never will but for the very few that choose to stand alongside me, I raise my hat to you for together we will chart a path of hope, victory and legacies for generations unborn.
Remember, we were made to live and not exist.