Dystonia Awareness Month

Hey! We are down to the final third of the year and ironically September has been recognized in the US as Dystonia Awareness Month. What is Dystonia and why should there be an awareness? In no fancy words, it is simply acknowledging that there are more people in this world than you think you know. “Lord, give me the wisdom to differentiate between the things I can change and those i cannot change!” Dystonia falls in the latter category – dredging up words like neurological disease or disorder, rare and incurable, genetics, an overwhelming sense of helplessness, the ridicule of others who think less of you because you ask, the irony of life’s unfairness, the joy of knowing that you are never really alone, the sheer delight of knowing that there’s strength that lies beyond human frailty. That is Dystonia!

I thought I knew pain however the last two weeks have been an orientation in pain – the pain that cripples you and forces you to your knees, bouts upon bouts of excruciating pain, unpredictable and unrelenting as always. Pain that makes you long for the sweet transition from this cold, cold world. That is just an aspect of dystonia; the unwillingness of my body to cooperate with me, the knowledge that life as I thought I knew (and vainly planned for) suddenly transformed in an instant, the inexplicability of my helplessness and the beauty of knowing that despite how much sorrow surrounds me, there is joy not too far away. When the truth dawns that this is just a prelude to an eternity and how I live it regardless of my circumstances defines my destination. A destination that I so long for, and thus empowered by this, I must make each day that I yet draw breath count for something.

I have no regrets! None at all and if the chances were posed to me again, my answer would be, “I would change not a thing because change is inevitable!” It is not the chances we encounter that define us but rather the choices we make and today I make one as i painfully write this, I refuse to let Dystonia define me. Change my circumstances, strip me of my belongings but with fists clenched in pain, I defy you even with the last wisps of breath that i exhale. This has been truly a journey – an unprecedented one to say the least however one that has taught me so much that I know that even when I am knocked down, there is still strength to not just struggle to my feet but to also reach out and help another. It has been a journey that has redefined family, completely changed my perspective on living to love and revealed that none of us knows what strength we either possess or the vast reserves of strength that we have access to.

Love and Giving

This is a journey that has made so much more glaring the exploitative nature of man at his primal core and yet has also shown me that true love is not sought neither is kindness the result of scientific computation. I have learned that life is like the ocean with waves either forging or receding, that shoes are an adornment for feet that we take for granted most times. There will always be that friend who sticks closer than a brother and even at the detriment of his personal satisfaction, is willing to sacrifice just to ease my pain. There will always be those memories engrained forever of events that i would never have imagined – events of so much weight and value but yet thinly veiled by the indifference and nonchalance of many. I can show you my friends if you ask because I call them family, dystonia helping to rip off the veneer and expose the richness of hearts that beat true and strong, and also reveal in stark nudity the ignorance of hearts that are barely beating. I regret not by any whim the process of being constantly forged, every hammer strike at the forge shaping me despite the accompanying pain.

Today, I am grateful for a life lived – the inconvenience of dependency as it struggles with the history of a life surrounded by so much comfort but yet in total lack at the present. Today I celebrate you – for tolerating my ignorance, for keeping me company in times when words were not needed, for your shoulder to cry on but more importantly to lean on. For pressing through the brambles of an ego very brittle and of nought to me, for standing at my gate (respecting a privacy no longer of value) even though my walls are all but crumbling – a city whose beauty once was and will be to come in no short period. For patiently learning even when I thought I had nothing to teach and persevering in teaching me that I will never be alone despite my bullheadedness. For those nights you stayed up whilst I battled insomnia, offering up prayers that I was unaware of. And standing in the gap on my behalf, being a conduit for answers undeniably sent from heaven, I celebrate you. I am here because you cared, listened and did not disobey God’s instructions.

Tonight I am thankful that should the curtains drop, my footprints will be seen and my life’s tale a source of hope and encouragement. That is what I want you to be aware of – that I went down swinging albeit feebly, going by the standards of crowds that mean nothing but a cacophony of discordant noise. Even as the night all but envelopes me, I am thankful that my light wasn’t extinguished by the lazy whisper of a summer night’s breeze. Thank you for not thinking less of me. Thank you for sharing your own struggles even as we journeyed together regardless of how much or how little time we spent together. It will never be about the distance because as long as hearts beat, resonating with kindness and compassion, every second matters.

Remember that I did not do it my own way; could never have done it my own way, but with lives intertwined and paths crossed, mine is a story of triumph amidst the ruins! A tale that would be incomplete without you.

פרידה עד שנפגשנו שוב בתזמון שלו, וייתכן שאהבתו של אלוהים להיות אמיתית לך!

Adios!