“Round and round the garden like a teddy bear…” is one of those childhood rhymes that seemingly defy time. Passed on from generation to generation, it epitomises the innocence of childhood and the desire to enjoy life as we live it. However, as most have found out, life is less of a merry go round or a Ferris wheel but more of a journey with the beginnings not made by personal choice. Life is a journey that begins with child birth and culminates in the transition of life through death. This is made clearer each day by the experiences we encounter, the choices we make and of course the unpredictability of life – each stretch of life followed by a bend and more often than not, what comes at us on the bend is what usually defines who we are and who we get to be.
I have in recent times, being given the opportunity to talk about my struggles with dystonia and myoclonus, the unique but humbling privilege of creating awareness of the neurological disorder termed dystonia. As is often the case, there are always the visible signs on faces as they struggle to come to terms with the words that I speak and so I want to write just a little bit of the battles I face on a daily basis. This is no nursery rhyme, I really wish it was, because most rhymes usually have happy endings based on the fleeting happy nature of most childhood stories.
The uniqueness of the human brain will never be completely understood but somehow I acknowledge that like a finely tuned automobile engine, when something is awry upstairs then seeking fun at a circus is definitely not the fun activity for me. Longing for the usually deserved rest for the human body, my brain is still actively firing away on all fronts; the highway of my nervous system is in a very sensitive state and so I try several supine positions to discover the least uncomfortable. Oh and yes, I definitely have to trick my brain into focusing on something so as to allow it relinquish its hold on my aching body. With my eyes shut, I still feel thoughts bouncing around my head like the hamster on its wheel. The pills kick in but the bad days are dreadful because my brain is just like the race car that has pulled into the pit stop, engine revving on all cylinders.
‘Send in the fire engines, this engine is about to blow a gasket or two…’ is literally apt because even while I try to rest, my brain is literally having a fun day. But alas my brain cannot have a fun day all by itself and so with little activity and response from a body trying to unwind, it becomes that race car with the brakes engaged and the gas pedal to the metal. Hallucinations are not that scary in this context, but somehow just by sheer persistence, I am awakened by the ‘fun’ my brain is intent on having. I definitely need more pit stops but in all honesty, it is a game that I am getting tired of. As the new day is birthed, it just seems like I have been chosen to always chaperone her and when friends comment on my ‘stamina’ and ‘limitless energy’, I choose to take it as a complement because this ship is not going down……not on the watch of Him who I solely depend on
Snatches of sleep when I can are actually victories and though they come in notches of two or three hours, I welcome them. There is a purpose to this life and whilst the vehicle I am in is slowly being worn out, I choose to remind myself that “it is better to wear out than to rust out.” Pills are not the panacea, yes they help but these are situations where the extraordinary becomes the norm. Where the unseen and the unheard become my chosen way of living, where faith is less of a word and more of an act. I make these choices everyday, resolute in my understanding that this is a season and every season has an end. I lift my eyes upwards, beyond the hills because therein comes the strength I need to make each day count.
I have since learned the hard way that sleep and rest might seem synonymous but I can assure you that they are not. With a satchel of pills readily handy, I now waltz through life on my own terms; battered but not defeated, isolated but not alone – itemising with every experience, the triggers that lurk not in the shadows but in the every day activities of human life. I have hitherto stated that without the turmoils of the storm, life really is devoid of substance but for me, every night is a unique experience as I combat the sinewy arms of insomnia. Pain still lingers even though I choose not to accept him as a legal resident within this body.
It is a new day again, replete with all the special needs provisions I require to face each day, with aching joints I embark on today’s journey. Thankful for today, I strap on my accoutrements for this body, arm myself with my cane and indulge myself in a hearty meal for my Spirit because it will always be about the strength on the inside. That is what keeps me going each day as I carefully make my way through paths that have been lavishly decorated with extra sensitive mines, each one poised to knock me down. ‘Fire away’ I chuckle, there is more to me than a chemical imbalance, there’s more to me than trembling limbs, there’s more to me than dystonia……there is so much more.
פרידה עד שנפגשנו שוב בתזמון שלו, וייתכן שאהבתו של אלוהים להיות אמיתית לך!